Human Rights and Mental Illness 

Report of the National Inquiry 
into the Human Rights 
of People with Mental Illness 


Part III 


People with 
Particular Vulnerabilities 




Chapter 17 

ELDERLY PEOPLE 

Introduction 

Psychiatric disorder is at least as prevalent among the aged as among the 
young, but elderly people also have special needs. Old age can bring economic, 
social, physical health and accommodation problems which make coping with 
a mental illness doubly difficult. Compounding these factors, evidence to the 
Inquiry clearly established that the elderly are often victims of discrimination 
in health services, either through abuse or neglect. The worst images associated 
with the old mental institutions — for example patients being physically 
restrained or sedated — are still the reality for many confused and sick elderly 
people. Their mental illness frequently goes unrecognised and untreated, or 
inappropriately treated. All these problems are becoming more urgent as the 
proportion of older people in our population rapidly increases. 

The most serious mental illnesses, such as schizophrenia and manic depression, 
are found among the elderly. But two disorders afflict them particularly 
frequently: dementia and depression. 

Dementia 

'Dementia' means a loss or impairment of mental powers. The term is used to 
refer to a group of conditions (including Alzheimer's disease) where the most 
prominent symptoms are memory loss and confusion. It is the most common 
mental health problem among people over 80. Among the younger elderly (65-80) 
other disorders are more common (especially depression), but dementia is 
probably still the most troublesome. 

It has been called the living death. And this is really what happens. The person 
in later stages is there in body but their personality has gone. It is not the 
same person.1 

Most dementia (about 70 percent of cases) is due to Alzheimer's disease, and 
the term 'Alzheimer's' is often used (inappropriately) to refer to dementia 
generally. The precise cause of Alzheimer's disease is unknown. The second 
major cause of dementia is stroke, which damages patches of the brain and 
produces 'multi-infarct' dementia. Dementia can also result from diseases such 
as AIDS, Huntington's Chorea or Parkinson's disease, or from alcohol-induced 
brain damage. 

Human Rights and Equal Opportunity Commission Page 509 



Whatever its origin, the prominent manifestations of dementia are usually the 
same: confusion and loss of memory (especially short-term memory), often 
accompanied by delusions or depression. It is usually progressive and 
irreversible. 

There is some disagreement about whether dementia is a mental illness or 
simply a physical disease affecting the brain. NSW is the only State which has 
a detailed operational definition of mental illness incorporated in legislation,2
 and that definition does not include dementia. So for certain important legal 
purposes (such as involuntary admission to a psychiatric hospital) dementia is not 
classed as a mental illness in our most populous State. But expert witnesses to 
the Inquiry were virtually unanimous that for medical purposes — and in terms of 
social impacts — it should be treated as a mental illness.3 

Incidence: the Ageing Population 

The number of older people in the world is increasing rapidly. The proportion 
of the population which is elderly is also rising in industrialised countries, 
due to lower birth rates and greater longevity. 

In Australia, the number of people over 80 years old is expected to grow from 
260,000 in 1981 to 560,000 in 2001 and 790,000 in 2021. The number over 65 
will be 2.26 million, or 12 percent of the population, by 2001; and 3.48 
million, or nearly 16 percent of the population, by 2021. Some European 
countries already have more than 16 percent of their population over 65. 

The rise in the elderly population will bring a corresponding increase in the 
mental disorders of the aged. In most industrialised countries dementia 
currently affects about 5 percent of people over 65. However, the incidence 
rises sharply as age increases: 20 percent of those over 80 are afflicted.4 At 
present, 100-140,000 Australians have moderate to severe dementia — but this 
number is expected to exceed 200,000 within 10 years.5 

Dementia is not restricted to the elderly: 10 percent of sufferers are under 65. 
However, there are no services designed specifically for these thousands of 
younger sufferers.6 

Where are the Dementia Sufferers? 

Approximately half of Australia's dementia sufferers live at home, alone or 
with relatives. A substantial number live in residential facilities (hostels and 
nursing homes).7 Many, however, are homeless or live in boarding houses or 
refuges, where they frequently receive no formal treatment for their mental 

Page 510 Mental Illness Inquiry 

illness. They also miss out on support from family and friends which is vital 
to so many dementia sufferers living in the community.8 Expert witnesses told 
the Inquiry that 60-80 percent of nursing home residents have dementia, and 30 
percent suffer from depression.9 But some are in residential care primarily 
because they are physically ill or frail. If they were physically well, a 
significant number could live at home.10 

About 3000 dementia sufferers are patients in psychiatric hospitals.11 Some are 
there primarily because they have another mental illness, and some because 
their dementia produces severely disruptive behaviour. However, a number are 
still so confined because our society has provided no alternative. 

Depression 

According to expert opinion, depression among the elderly often goes undiagnosed 
— but it may be twice as common as dementia.12 About 50 percent of 
elderly people have at least one symptom of depression.13 Estimates vary, but 
one Australian study found major depression in 10.2 percent of those over 65.14
 (Even on a conservative estimate, this would mean over 100,000 older 
Australians suffer this painful condition.) 

One measure of depression is the suicide rate, which is higher among people 
over 65 than in any other age group.15 The rate for men 70-79 is the highest 
for all males.16 

Depression frequently accompanies other health problems. It often occurs 
alongside dementia, and the symptoms of the two conditions are sometimes 
confused.17 It is associated with chronic physical illness, which is itself more 
prevalent as people get older. Depressive symptoms are also a common side 
effect of prescription medications, including hypertension drugs — and the 
elderly take far more medications than the young. 

Ironically, depression is one of the most curable mental illnesses. However, the 
evidence indicated that among the elderly, it is often — unnecessarily — left 
completely untreated. All too often it is not even diagnosed. 

Treatment of the Elderly Mentally III 

Evidence to the Inquiry established that our health system often ignores elderly 
people who are mentally ill, or assigns them the lowest priority. The elderly are
 more likely to get drugs, less likely to receive psychotherapy, and less likely 
to use outpatient services than younger patients.18 They may also miss out on 

Human Rights and Equal Opportunity Commission Page 511 

the medical care they need, for example an operation or physiotherapy which 
could improve the quality of their lives.19 

People are often denied treatment or assessment because they are old and because 
they are dementing. Why operate on an old person's painful joint — they haven't 
got long to go. Or a person with dementia doesn't get treatment for their peptic 
ulcer because, after all, what do they know?20 

Neglecting the physical health needs of old people is a form of elder abuse. It 
is also self-perpetuating: elderly people in poor health are three to four times 
more likely to become victims of abuse than those in good health.21 

Inappropriate treatment is not only unhelpful; it can also distract attention from 
other health problems needing attention. For example, the Inquiry heard 
evidence concerning an elderly woman in Queensland who was given ECT as 
a treatment for disturbed behaviour which was assumed to be caused by a 
mental illness. In fact the behaviour was due to an undiagnosed bowel irritation 
which, in a younger patient, might not have escaped detection for so long.22 

When an elderly person's mental illness requires hospitalisation or residential 
care, it is hard to find a bed available. And if one is found, it is quite likely to
 be inappropriate. If elderly people with mental illness remain in the community, the
 services they need are often not provided. 

In the competition for scarce mental health resources, the elderly take low 
priority. For example, in hospital redevelopment, the elderly are at the bottom 
of the list: 

The acute care wards are being rebuilt first and the drug and alcohol wards, and then
 eventually they plan to rebuild the psychiatric wards for the elderly. That may be 
seven years down the track, it may be ten years. But it is going to be last, there is 
no doubt of that, and of course, by then I expect the money will have run out.23 

Some witnesses told the Inquiry of a shortage of psychogeriatric beds in 
hospitals; others said the problem is not so much an overall shortage as an 
inappropriate distribution of beds between hospitals and other residential 
facilities.24 When places are available, they are not always appropriate. Little 
attention is paid to the need to separate the demented elderly from the 
psychiatrically disturbed but non-demented elderly, from psychiatrically 
disturbed younger people and (in nursing homes and hostels) from patients 
whose disability is solely physical.25 

Page 512 Mental Illness Inquiry 

Treatment of Dementia 

We may still not know what causes the major dementing illnesses and we have no cure but 
we do know how to treat them. I should say that we know how to treat the people who suffer
 from them because there is a difference between treating the disease and treating the 
sufferer... Let the researchers carry on their work. We all hope that science will provide
 the answer and that one day there will be a prevention and a cure. But in the meantime we
 must spread the word that dementia is manageable, that people with dementia need not 
suffer because of the illness.26 

Managing dementia essentially consists of providing safe living arrangements 
where sufferers can maintain their remaining mental and social skills and 
protected, as far as possible, from events that make them anxious, confuse 
angry or frustrated. 'Such feelings go badly with dementia because the suffer 
is unable to deal with the reason and can only respond to the feeling itself. 
This means that, at least in the later stages of dementia, treatment is closely 
linked with accommodation. In the early stages it is more dependent on support 
services in the community.28 

Evidence to the Inquiry consistently indicated that people with dementia in 
institutional care should be separated from people who are not cognitively 
impaired. For people without dementia, it can be very distressing to be around 
someone who 

doesn't know what day it is, where she is, who you are, what you just said, what 
happened 30 seconds ago, what is happening now and what will happen to her in the next 
30 seconds.29 

The evidence also clearly indicated that one important distinction frequently 
overlooked by health planners is between dementia sufferers who are bedbound 
and those who are ambulant, ie physically well and inclined to wander. The 
behavioural changes that come with dementia can be extremely disruptive to 
other patients. For example, the right to personal privacy is recognised in 
Federal law and the Federal Government's Charter of Nursing Home Rights and 
Responsibilities,30 but it is extremely difficult to enforce against a wandering 
co-resident with dementia: 

In a nursing home situation someone with dementia can go in and rummage in somebody else's 
locker or dressing table. They can get into the wrong bed. And the normal aged get very 
upset by this sort of behaviour and lack understanding, because that bed and that dressing 
table is their only private space left in that time of their life. And so they need to be 
kept contented and happy as well as the person with dementia, who does not deserve to be 
yelled at for going into the wrong room or rummaging. Rummaging and wandering is a symptom 
of Alzheimer's disease.31 

Human Rights and Equal Opportunity Commission Page 513 

People with dementia are also a continual disconcerting reminder to other residents of what
 may await them as they grow older. (And since the majority of 
our elderly will not develop dementia, this fear is often needlessly induced.) 

The needs of dementia sufferers themselves are also very different to those of 
many other elderly people: 

They do not need stimulation, they do not need occupational therapy. They need a quiet
 environment where they can do duties or participate in activities they are familiar with.
 Simple things like light housework, raking the garden. And they need to be in small groups. 
Large groups can confuse them more. It would be like going into a room and not recognising 
anybody there. And every time they go into a gathering that is how it feels to them because 
their short-term memory is very, very short.32 

Contrary to the approach advocated by many witnesses to the Inquiry, the 
Federal Government's current policy on institutional care for dementia sufferers 
is to integrate them in ordinary hostels and nursing homes.33 Recently it 
modified its hostel funding formula — apparently to allow a higher subsidy for 
residents suffering from dementia. But it has shown little support for the idea 
of dedicated dementia hostels or nursing homes.34 

Residential Treatment 

Hospitals 

The psychogeriatric wards of public hospitals were criticised by a number of 
witnesses to the Inquiry. The large institutional setting is intimidating and 
depressing for patients and their families, lacking in privacy and expensive to 
run. For example in Sydney: 

I would emphasise the very inappropriate nature of the long-term ward... it is 
a barn. It is very institutional, quite inappropriate for long-term care, for 
people to live in for the rest of their lives... And you should see the toilets 
and the bathing facilities. It is horrible.35 

And in Newcastle: 

Some examples I find unsatisfactory are the persistence of dormitory style 
accommodation for elderly patients, the absence of facilities in many wards for
visitors' rooms and also the isolation of wards in which such patients are kept. 
For instance at Morisset Hospital, which is the site of most of our long stay beds,
 there is no public transport access. The railway station is some miles away and the 
taxi services there charge a country rate, which means that the relatives have to pay 
there and back for a trip. In general the standard of 
accommodation is very old and requires much renovation.36 

Page 514 Mental Illness Inquiry 

Similarly in Tasmania, the major psychiatric institution is 40km outside Hobart 
and public transport access is described as 'terrible'. Not surprisingly, patients 
there rarely receive visitors (one-tenth the number received by patients in a smaller 
facility in town).37 The isolation this imposes is cruel — and especially difficult 
for elderly people and their spouses to overcome. 

A particular problem for elderly people in psychiatric hospitals is that their 
physical health needs tend not to be adequately met. The elderly have far more 
health problems than younger patients, but psychiatric facilities are not 
equipped to deal with chronic physical ailments. This means elderly psychiatric 
patients do not receive the level of care they should be getting from medical 
specialists, physiotherapists and other health professionals.38 

There was a general consensus in the expert evidence presented that people 
with dementia should only be hospitalised as a last resort. But some 3000 
dementia sufferers live in mental hospitals,39 usually because there are no 
vacancies at smaller facilities. Some are people who were admitted years ago 
with schizophrenia or another mental illness, who have grown old and 
developed dementia in hospital. Others have been admitted more recently, 
specifically for disruptive behaviour caused by dementia. 

Some people currently in hospital with dementia would be unable to cope with 
life anywhere else. But many patients admitted to specialist psychiatric facilities 
mprove over time, to the point where they could very well be placed in purpose designed 
dementia facilities (of which there are still very few), nursing homes or hostels, making 
room in the psychiatric facility for more disturbed people. The Inquiry was told, for 
example, that Hobart's Royal Derwent 
Hospital has some 70 patients in this category. Unfortunately, the waiting list 
for a place in a nursing home in southern Tasmania is 100-120 names long; and 
as vacancies arise, they go first to people still in the community rather than 
those who are already in institutions. No new dementia patients are being 
admitted to Royal Derwent, but those already there remain in hospital because 
'there is nowhere else to go.'40 As one expert said: 

I have always been convinced that this is almost a crime to send elderly people to such a 
situation. It is always counter-productive, always makes for more disturbance, and the only
 possible way that the mental hospital can cope with this is either to drug them down, tie 
them down, or lock them in and let them pace around.41 

Discriminatory funding arrangements have also been a significant problem. 
Before the Inquiry commenced, Federal Government rules denied admission to 
a nursing home to anyone who had been a patient in a psychiatric hospital for 
12 months.42 The reason for the rule appeared to be cost-saving for the 

Human Rights and Equal Opportunity Commission Page 515 

Commonwealth (which funds nursing homes), by keeping patients in the 
hospitals (which are funded by the States).43 

Discrimination by nursing homes against the mentally ill also prevents transfers 
out of hospital. An elderly person known to have schizophrenia would very 
likely be rejected, even if the condition were well controlled with medication.
44 A psychogeriatrician at the Selby Lodge psychiatric unit in Western 
Australia told the Inquiry: 

We have had the situation where relatives have approached a prominent nursing home, told 
them that their relative was in Selby Lodge, and have been told: we do not accept patients 
from Selby Lodge. That same nursing home, on the other hand, will ask us for help when they
 have difficult patients.45 

Nursing Homes and Hostels 

For many elderly people, involuntary admission to an aged institution can be the ultimate 
denial of human rights. The level of dependency and corresponding loss of power experienced 
is often without parallel. Lives have to be adjusted to accommodate a set of routines imposed
 by a hierarchical structure in which the patient is at the bottom of the heap. The loss of 
freedom and corresponding quality of life is devastating for many elderly people.46 

Nursing homes and aged hostels are an important form of accommodation for 
elderly people who can no longer manage living at home. The two categories 
overlap, but generally hostels are for those who are physically well and without 
significant behavioural disorders, but who need some help with eating, bathing 
and dressing. They have fewer staff than nursing homes, and usually no nursing 
or medical staff. 

Nursing homes generally cater for people who need substantial daily assistance 
and continuing nursing care. These facilities are often associated with hospitals, and most
 patients are seen regularly by their general practitioners. However, most nursing homes have 
little or no contact with psychiatric services.47 

Most nursing homes and hostels are run by charities or private operators. They 
are funded by a Federal Government subsidy and by the residents, who pay 8590 
percent of their pensions to live there. In some cases State governments also 
contribute top-up funding. 

Apart from these 'Commonwealth-funded' homes, there are a number of State 
nursing homes (run by State governments and funded from State health budgets) 
and some completely private facilities. 

Page 516 Mental Illness Inquiry 

Nursing homes and hostels are intended to serve different clienteles, but they 
share common problems of long waiting lists and, at least from the perspective 
of dementia sufferers, poor design.48 

Waiting lists for admission to both hostels and nursing homes are long — partly 
because of a shortage of places, but more because the shortage of support 
services in the community causes families to see residential care as their only 
option. Family carers often go to a great deal of trouble to research the best 
place for their demented relative to go, only to find that in reality they have 
very little choice. If a vacancy comes up they are forced to take it, regardless 
of whether they consider it appropriate. 

The design of nursing homes and hostels poses a major problem for managing 
ambulant dementia. About 10,000 dementia sufferers in Australia who live in 
nursing homes have serious behavioural disorders.49 Nursing homes, like other 
old age services, are usually designed to cater for frail elderly people who are 
often bedbound or at least chairbound. These homes often face onto main 
roads, and fire regulations require that the doors be kept open. But ambulant 
dementia patients tend to stray from the premises, or disrupt other residents if 
forced to remain inside. Staff cannot be expected to chase after them constantly,
 so instead: 

they get zonked out with medication or tied to their chairs. Not the nursing home's
fault, except they shouldn't have admitted them there in the first place. They admit 
them there because there is nowhere else for them to go.50 

Poor architectural design has been exacerbated in the past by the Federal 
Government's formula for funding staff in nursing homes and hostels. The 
formula is based on a Resident Classification Instrument (RCI) (or in hostels 
the Personal Care Assessment Instrument), which measures the needs of every 
person admitted to a nursing home. The RCI weights physical disability far 
more heavily than mental disturbance. Someone with dementia who is 
physically well rates much lower for funding than a bedbound stroke victim. 
This means ambulant dementia sufferers are seriously underfunded — given the 
staff time they actually require. As one expert witness told the Inquiry: 

A 70-year-old, fit as a Mallee bull, strong ex-farmer, say, who is wandering around 
trying to get out, potentially aggressive if he is frustrated, doubly incontinent, 
gets very significantly less nursing staff than somebody who is immobilised in bed...
it is incongruous and grossly iniquitous.51 

Since the cost of caring for people with ambulant dementia is so high, some 
nursing homes refuse to take them. More disturbingly, according to one expert: 

Human Rights and Equal Opportunity Commission Page 517 

every nursing home around the country that is trying to put in a special care unit 
for ambulant people with behavioural disturbance with dementia is going broke.52 

After the Inquiry had heard the evidence referred to above, the Federal 
Government (on 1 April 1992) introduced a revised RCI which gives more 
weight to behavioural disturbance as a factor in funding nursing home and 
hostel residents.53 However, it is not clear that this formula will significantly
 address the chronic problem of underfunding for dementia.54 

Standards of Care and the Charter of Rights 

The Commonwealth has set care standards for its nursing homes and hostels 
which constitute conditions for funding.55 In 1990 it also introduced a Charter 
of Rights and Responsibilities for nursing homes and a similar one for 
hostels.56 Whereas the standards are basically regulatory, the Charter informs 
consumers of their rights. The rights prescribed reflect international human 
rights instruments; they include the right to quality care, to full information, 
to personal privacy, to move freely without undue restriction, to maintain control 
over one's personal and financial affairs, 'to be treated with dignity and respect, 
and to live without exploitation, abuse or neglect'. 

While witnesses expressed strong support for the Charter, evidence to the 
Inquiry indicated that for many nursing home residents these rights are not 
translating into reality: 

[People] with dementia [aren't] fed, even though they can't feed themselves — 
the food is plonked down in front of them and they're left. Or the lack of dignity —
 they pull the clothes off themselves, and they're left naked. Or the lack of 
appreciation of personal values, so that an elderly man always had his shower in 
the evening, and he's forced to have it at five in the morning because that's the way
 the institution is structured. And of course he doesn't want the young female nurse
 showering him, because it degrades him, it humiliates him. And he lashes out and 
becomes angry when they try to do that, and so he is restrained or he is sedated.57 

Even in the best nursing homes, people with dementia are frequently unable to 
understand or exercise their rights — for example the right to information about 
their treatment or the right to control their own affairs. In such cases it is up
to family members or guardians to understand the Charter and protect these 
rights. The Charter does not mention dementia, but the Alzheimer's Association 
has asked the Government to consider the role of family carers in relation to 
the Charter, to strengthen and legitimise their involvement.58 

The Charter also specifies responsibilities, including that of respecting the 
rights and needs of other residents in nursing homes or hostels. As previously 
mentioned, the presence of a person with ambulant dementia can seriously 

Page 518 Mental Illness Inquiry 

infringe the rights of other residents who have their mental faculties intact.
 This places staff in the invidious position of having to decide whether to curtail 
the rights of one resident (eg by sedation) to preserve the rights of others (eg 
to privacy).59 This is not a deficiency in the Charter, but rather a result of 
current nursing home design and the established — but quite inappropriate — policy 
of forcing many mentally ill elderly to live with the mentally well. 

The Charter has the significant limitation that it applies only to Commonwealth 
facilities, and not to State government homes. Nor does it apply to psychiatric 
hospitals, boarding houses or private nursing homes which do not receive 
federal funding.60 Since, according to the evidence, most people admitted to 
residential care have little choice and less knowledge of the type of funding 
arrangements applying to the facility they are going into, it is basically 
happenstance whether or not they get the benefits of the Charter: 

We do not think, whether a service is State-run with the mental health system or 
Commonwealth funded in the nursing home or hostel, that people should have different
 rights. [In either type of institution] the needs of the person with dementia...
are exactly the same.61 

The Charter may not be delivering all that it promises, but the effects of 
excluding non-Commonwealth homes from its operation are substantial. The 
Charter is reinforced by a standards monitoring scheme which provides some 
level of control, through the potential threat to withdraw funding if standards 
are not met.62 Residents of private or State government institutions are denied 
not only their rights being clearly defined, but also the protection that this 
monitoring affords.63 

The States have their own regulations setting conditions for licensing of nursing 
homes, but evidence from several States (Queensland and Western Australia in
 particular) highlighted some disturbing practices in State nursing homes. 

Queensland has a regulation requiring the Director-General of Health to be 
notified if any resident has had to be coerced or restrained for long periods. 
The Inquiry heard evidence that this has been contravened by State nursing 
homes.64 Some nursing homes make their own judgment on whether a person 
with dementia has a mental illness or an intellectual disability, and then 
'process' the patient according to what is most convenient. Outright violent 
abuse also occurs: for example, in June 1992 a coroner in Victoria found that 
an elderly woman who died in a private nursing home in 1989 had been beaten 
by a nurse the night before.65 

Denial of basic medical care is a more common form of elder abuse: 

Human Rights and Equal Opportunity Commission Page 519 

The daughter of an elderly lady in a nursing home...complained to the Senior Medical 
Officer of the facility that her mother's prescribed pain relief was not being 
dministered by nursing staff...the SMO retorted: 'demented people don't feel pain.'66 

Evidence to the Inquiry also suggests the general standard of living in some 
State nursing homes requires investigation: 

For instance, six people live in a room and the food that is presented bears no 
resemblance to the menus on the walls.67 

Overmedication 

Elderly people with a mental illness are more likely to be given drugs than 
younger patients — and less likely to be offered alternative forms of treatment 
such as psychotherapy.68 

In the case of people with dementia, the tendency to administer drugs 
frequently turns into overmedication. Dementia sufferers are often alert and 
active at night, especially if they have not been fully occupied all day. To cope
 with the inconvenience this creates, staff in nursing homes often resort to the 
'chemical straitjacket' of sedatives. For example, the Inquiry was told 60-70 percent
of elderly patients in Tasmanian nursing homes are routinely prescribed night-time 
sedatives. Whether the drugs are actually administered depends merely on whether staff
are available to supervise wakeful patients.69 

Overmedication was also referred to by witnesses in other States,70 and there 
is no reason to assume that Tasmania is worse than other jurisdictions in this 
respect. 

Apart from being medically unnecessary, the sleeping tablets used are mostly 
benzodiazepines — drugs such as Valium, Mogadon and Serepax which are 
dependency-forming. The effects were described by an expert witness to the 
Inquiry in the following exchange: 

Chairman: Is there any adverse effect that occurs from people taking sleeping 
tablets when they do not need them, or is it just completely neutral? 

Dr Mathew: Definitely...if you sedate them they will be sleepy during the daytime
 and [have] hangovers and also they will get used to it and they will not 
be able to sleep without them. They will get habituated, most of these drugs do. 
Chairman: Sorry, did you say they become habituated? 
Dr Mathew: Habituated. 

Page 520 Mental Illness Inquiry 

Chairman: So is there an element of addiction or habituation? 
Dr Mathew: There is, yes.71 

To make matters worse, psychiatric drugs can have effects which actually 
resemble the symptoms of mental illness, especially of depression. This can 
confuse the diagnosis and treatment, so that patients end up taking more drugs 
to 'cure' them of the effects of the drugs themselves. 

Solutions: Special Dementia Care Facilities 

Many of the behavioural problems associated with dementia can be ameliorated 
by designing residential facilities specifically for dementia sufferers. Special 
dementia hostels are similar to standard hostels or nursing homes, but with a 
secure environment and with staff who have received training in dementia 
care.72 These two factors virtually do away with the need for sedation as a 
'management' (rather than a medical) practice.73 From a practical point of 
view, one major design requirement is simply a garden for patients to walk in, 
with a secure fence around it to prevent them wandering away. The design 
should also minimise confusion for people who are apt to forget where they 
are. 

In spite of the large and growing number of elderly people affected, Australia 
has only a handful of purpose-built dementia facilities. One which impressed 
the Inquiry is the Flagstaff Gully nursing home, opened recently in Hobart 
after an 8-year planning process. Operated by the Alzheimer's Association, it 
provides a series of small 'home-like' units in a secure environment, 

but it does not appear or feel or look like a locked environment. There is
enough outside wandering area and enough doors leading to other wandering places,
 so that theydo not feel that they are in a locked environment. And neither do the
 staff or family who visit. And that is a very important part.74 

Flagstaff Gully accommodates 32 people with ambulant dementia and significant 
additional problems — for example, double incontinence and behavioural 
disturbances like aggression or 'trying-to-get-out sort of behaviours'.75 A 
research project is under way to compare its effectiveness with that of a normal 
mental hospital ward. The research to date is encouraging: 

They are all so happy and relaxed... When you go there you will see people who 
you will say: these people are not behaviourally disturbed, they should not be 
here. I can assure you they were very behaviourally disturbed when they went there, 
and it is the environment and the staffing that has improved the situation.76 

Human Rights and Equal Opportunity Commission Page 521 

Flagstaff Gully's designers hope to demonstrate that their model is more cost-
effective than a hospital ward, being cheaper to build and using staff more 
efficiently. They estimate staff time savings will pay for the building costs in 
two years.77 

Another special dementia facility visited by the Inquiry is the Lefroy Hostel 
run by Anglican Homes in Perth. This hostel is also secure, with extensive 
grounds where the 36 patients can wander safely. The building itself is designed 
to allow residents to walk around without encountering long corridors or dead 
ends, and to end up back where they started. 

Rooms at Lefroy Hostel are furnished with the residents' own familiar 
possessions to give them a sense of belonging, of ownership and self esteem. 
The dining areas are small, so that even though they may not recognise people's 
names, they can recognise and retain the feeling and emotions and also retain 
some recognition of faces, so they can form friendships.78 

Apart from the design of physical facilities, the success of residential dementia 
care depends critically on the quality of staff: 

Good staff can partially retrieve a poor environment. The most marvellous environment
cannot retrieve the situation produced by poor or untrained staff.79 

The staff at Lefroy Hostel have had specific dementia training but they are not 
nurses. They are chosen 'more [for their] attitude to elderly people than 
qualifications'.80 The hostel tries to keep its residents active, emphasising 
activities that they find rewarding and which maintain their skills as long as 
possible. 

The operators of the Lefroy Hostel have estimated the relative cost of 
maintaining dementia sufferers in a standard hostel, an ordinary nursing home 
or a special dementia hostel like theirs: 

standard hostel special hostel nursing home (Cth)

cost per resident 17,000 26,400 34,000 
($/year) 

subsidy from Commonwealth 
5,400 10,900 24,000 

Page 522 Mental Illness Inquiry 

The cost of running a dementia hostel is more than a standard hostel, but 
substantially less than a nursing home. The subsidy from the Federal 
Government is also lower — so low, in fact, that Lefroy Hostel loses $250,000 
per year. The Western Australian Government has been contributing approximately 
$150,000 per year to make up part of the shortfall, but Anglican Homes 
told the Inquiry it cannot continue to operate at such a low level of 
Commonwealth funding. It has asked for the subsidy to be lifted to $15,000 per 
year per resident. This subsidy would make Lefroy and future special dementia 
hostels viable, and allow a significant number of dementia sufferers currently 
in nursing homes to be cared for more humanely — and more cheaply.81 

The NSW version of special dementia accommodation is the CADE unit (the 
acronym stands for Confused and Disturbed Elderly). There are 6 of these 16bed 
units, all outside Sydney. They are purpose-built facilities designed on 
similar principles to Flagstaff Gully and Lefroy: a secure environment with a 
locked garden, catering for small numbers of ambulant residents, with 
behavioural disturbance, but who are not in need of nursing care. The 
bedrooms in CADE units are grouped around the kitchen and residents are 
encouraged to take part in cooking and other normal activities as much as 
possible. Witnesses who have observed CADE units praised them as excellent 
dementia accommodation, while lamenting the fact that there are so few (a total 
of 96 units for a State with at least 35,000 dementia sufferers).82 

On the evidence presented to the Inquiry it is quite clear that the few special 
dementia facilities operating in Australia are far more successful than 
conventional methods of dealing with dementia — despite the financial and 
bureaucratic obstacles they face. 

The demand for places in special dementia hostels is difficult to measure, 
because the paucity of special facilities means geriatricians and social workers 
generally do not consider them an option. However, one study of people with 
dementia found 77 percent of those admitted to nursing homes would have been 
appropriately placed in a special dementia hostel if one was available; only 23 
percent actually needed the nursing care provided in nursing homes.83 As 
special facilities are also much cheaper to operate, it is obvious that they are 
a far more economical and humane investment for dementia care than nursing 
homes. 

Ironically, Federal Government policy is to keep down the number of nursing 
homes and expand the hostel sector: between 1981 and 1985 the hostel bed 
ratio per 1000 people over 65 has increased from 14.0 to 21.9.84 But under 
the policy of integration, it is only standard hostels which are being encouraged.
85 Since standard hostels cannot cope with severely demented, behaviour-

Human Rights and Equal Opportunity Commission Page 523 

ally disturbed people, they end up being placed in nursing homes — the very option
 the Government is trying to discourage. 

According to one group of aged care agencies, the National Anglican Caring 
Organisations Network (NACON), the Government's refusal to support special 
dementia hostels is adversely affecting four groups of people: dementia 
sufferers in nursing homes (who are unnecessarily sedated or restrained); 
mentally well residents (who are subjected to the disturbing behaviour of their 
dementing neighbours); staff (who must constantly be policing dementia 
sufferers; and relatives (who can see that their loved ones are inappropriately 
placed). NACON believes this policy could constitute a breach of the 
Government's own standards and the Charter of Rights.86 

Community Care 

A large number of dementia sufferers live at home, on their own or with 
relatives.87 This is partly because it is so difficult to get into a nursing home
 or hostel; but it is also because many elderly people and their carers would prefer
 to 'keep the family together'— at least for as long as this is possible. 

Dementia sufferers who live at home are said to be living in the community, 
or receiving community care. In fact 'community care' is a misnomer which 
obscures the reality of who is doing the 'caring'. It does not mean care by the 
community or even by the family, but most frequently by wives, daughters and 
daughters-in-law. Seventy three percent of dementia carers are female. The 
increasing participation of women in the paid workforce may well mean that the 
pool of women available for this unpaid work will shrink.88 

Another effect of the ageing population is that carers are also getting older. 
Whether they are the wives, husbands or daughters of dementia sufferers, they 
are frequently elderly themselves.89 

The whole demographic situation in Australia is changing, as in other Western 
societies. Because people had children later it means the carers are now getting 
older themselves and... If you're 60 years old looking after an 84-year-old mother 
and you've got bad arthritis, it might be difficult for you to lift her out of bed 
and shower her and things like that.90 

As with other mental illnesses, the Federal Government's policy on dementia 
now aims to encourage community care instead of residential care. This policy 
reflects clinical opinion that residential care should be the last resort. In 
principle, dementia sufferers should be able to live in the community unless 
they are physically unwell or have serious behavioural problems such as a 

Page 524 Mental Illness Inquiry 

tendency to run away.91 Evidence presented to the Inquiry clearly indicates 
that providing such services would still cost the government significantly less 
than residential care.92 But this policy can only respect the rights of the 
mentally ill if carers have the support services they need. 

Burden on Carers 

Dementia places a great burden on family carers. Caring for a dementia 
sufferer is itself a psychological and physical health hazard.93 Carers have 
high rates of depression, anxiety and other psychiatric problems. 

The best way to support a person with dementia is to support his or her carer 

— because a dementia sufferer's quality of life is linked directly to the carer's
 ability to cope. The single most significant cause of institutionalisation is 
family carer breakdown.94 One witness accurately reflected a great deal of evidence 
presented to the Inquiry: 


I wanted to care for her at home, but in the end her mental state meant that I 
became so distressed and finally found it too difficult to cope with her. It was
24-hour care for the whole family.95 

At its worst, inadequate support for carers can lead to elder abuse or 'granny 
bashing'. The United States has witnessed the emergence of a practice known 
as 'granny dumping', in which relatives unable to cope with the expense and 
strain of caring for their dementing elders simply abandon them in a public 
place.96 Elder abuse ranges from neglect and manipulation to violence or 
exploitation: 

It mostly occurs in families...because the families are under such stress that 
they don't know how to cope, and they lash out in frustration.97 

Economics for Carers 

Caring for a person with dementia can be a full-time job. Apart from the 
economic sacrifice carers make by dedicating themselves to this task, they also 
save the community the cost of institutional care and accommodation. The cost 
of keeping someone in a nursing home is over $500 per week.98 As an 
incentive for home care, the Federal Government offers carers the Domiciliary 
Nursing Care Benefit (DNCB). The 1992 Budget raised this benefit to a very 
modest $52 per fortnight — indexed annually. For the previous 11 years it had 
remained at $42 per fortnight.99 

Many carers told the Inquiry that the DNCB eligibility criteria discriminate 
against dementia sufferers. The criteria are extremely narrow. They require that 

Human Rights and Equal Opportunity Commission Page 525 

the carer live full-time with the patient, and that the patient be specifically 
in need of nursing care. Dementia sufferers need many hours of care and 
supervision which is not strictly nursing — so they frequently fail to qualify. 
This is another facet of the problem which has traditionally undermined funding 
for dementia sufferers in nursing homes. 

Our taxation system discriminates against dementia sufferers who have paid 
carers living with them: 

There is no allowance within the taxation [legislation] for payments made to a
 live-in carer. However, a person who looks after someone who is blind or confined
 to a wheelchair — that is, someone who has a physical disability — the person who 
is paying for that live-in carer can claim those expenses as a taxation 
deduction.100 

The system also discriminates between dementia sufferers at home and those 
in residential care: 

If someone with dementia is living in a nursing home, fees paid over $1000 are 
claimable as a taxation deduction, versus no fees allowable if that person is 
still living at home. Indeed, that actually encourages people to move their family
 member into an institution.101 

Services for People with Dementia and Their Carers 

Community care for people with dementia should start from the premise that 
there is an invisible army of health workers out there who are doing most of this
 anyway. There are families, friends, neighbours who are doing a lot of this, and 
there is no way our country could afford to replace all that — nor should we try to. 
What we should try to do is harness it and fill in the gaps.102 

The support carers ask for is hardly extravagant — indeed, in the Inquiry's 
view it is extremely modest: 

Most carers of dementia sufferers agree that they can cope as long as they can get
 a good night's sleep, and some daily respite.103 

The services that exist for dementia sufferers and their carers were described 
to the Inquiry by several expert witnesses as 'a hotch-potch, without any 
thought of a strategy',104 'a bureaucratic nightmare'.105 This is largely 
because, historically, our aged services were developed with the physically frail
in mind and dementia services were grafted on, often inappropriately. The most 
successful services overseas (eg in the UK) are based on integrated dementia teams
 comprising doctors, social workers and psychiatric nurses. The teams have contact 
with the hospitals, visit people in hostels and nursing homes, and 

Page 526 Mental Illness Inquiry 

also support carers in the community.106 Such an integrated approach is rare 
in Australia for any mental illness — including dementia. 

As with other mental health services, dementia services, such as they are, are 
concentrated in the major cities. This creates serious inequities for elderly 
people and their carers in regional centres and rural areas, where services are 
often non-existent.107 (See also Chapter 22 — People in Rural and Isolated 
Areas.) 

The community mental health services that do exist are under strain due to lack 
of resources. This can be potentially dangerous. For example, a HACC worker 
in Tasmania told the Inquiry of an elderly immigrant man who was visited by 
a community nurse every day: 

[The nurse] prepared a box of medicine for him — several pills three times a day. 
He would take the box in one go, unsupervised at home.108 

Practical support services are important in enabling family carers to look after 
their elderly relatives, yet still maintain their own lives. For dementia sufferers 
who live on their own, these services are all that allows them to remain in the 
community. The services range from counselling and medical treatment to temporary 
residential care. They may also include assistance with housework or gardening, 
daycare to give the carer occasional time off, or technical solutions like changing 
all the locks over to one key to minimise confusion. 

The services required will vary with individual dementia sufferers and 
individual carers. They will also change as the dementia progresses. So a 
primary requirement for dementia services is flexibility. 

Daycare 

Some communities have daycare centres where severely demented, behaviourally 
disturbed patients are looked after by nursing staff. Daycare helps 
maintain the dementia sufferers' social abilities.109 But more importantly, it 
gives family carers the occasional respite they need to continue to do the job 
of caring. One such centre in Hobart is estimated to keep 30-35 people in the 
community and off the waiting list for residential facilities.110 The Inquiry 
was told more dementia-specific daycare centres are 'desperately needed'.111 

Dementia daycare should be programmed around clients — rather than around 
standard tasks or bureaucratic requirements. That means being flexible, 
allowing people with dementia to choose whether to be involved in group 
activities or not, acknowledging individuality and encouraging independence. 

Human Rights and Equal Opportunity Commission Page 527 

Successful daycare is culturally appropriate. This may mean furnishing facilities 
in an old-fashioned style that makes elderly people feel at ease, or in a centre
 with Italian-speaking clients, providing an interpreter and Italian shortbread 
at morning tea.112 

The limited daycare available does not in itself substantially alleviate the 
pressure on home carers. Scarce resources only allow individual dementia 
sufferers a few hours of daycare each week, still leaving family carers to bear 
the overwhelming responsibility. One witness pointed out that dementia daycare 
does not even approach the service that is generally expected of childcare, ie 
8.30-5.30 on weekdays.113 Another suggested that daycare centres should 
ideally function as night-care centres as well, because people with Alzheimer's 
disease commonly have interrupted sleep patterns and are often especially alert 
and active at night.114 

Respite Care at Home 

One of the most valued support services is respite care in the home. Various 
organisations and departments provide services such as Meals on Wheels, home 
help and domiciliary nursing. Home services are usually funded through the 
Home and Community Care Program (HACC). Some use volunteer labour; 
others have paid staff. These mainstream services offer valuable assistance to 
aged people and their carers. However, most are designed for clients who are 
physically infirm but mentally competent. People with dementia have special 
needs. They need services which are flexible enough to accommodate their 
erratic life patterns, with staff specifically trained to cope with confused 
behaviour. 

The Alzheimer's Association (WA) respite service 

One apparently successful respite service is run by the Alzheimer's Association 
in Western Australia. It has 30 paid carers and 22 volunteers who provide help 
to about 100 people each week. In its three years of operation it has helped 
over 500 dementia sufferers, including 165 'hard cases' who were referred on 
by other agencies because they did not fit their criteria. 

Clients can be referred to the service by any source: relatives, a GP or another 
health worker or agency. The only criterion for acceptance is a diagnosis of 
irreversible dementia. Staff assess the elderly person 'in the most unthreatening 
way possible': obtaining details from a family member over the telephone and then
 visiting the family at home. The service then matches the family with a carer who
 is judged most appropriate for that client. Carers are matched on the 

Page 528 Mental Illness Inquiry 

basis of personality and past experience, rather than on an arbitrary basis such 
as living in the same locality. 

The scheme's strong point is that it is tailored to meet the individual needs of 
each person. This contrasts with most mainstream programs, which require 
their clients to fit into fixed schedules. Clients in the respite scheme receive 
six hours of care a week, which can be during the week or weekend, during the 
daytime or at night. If the family carer wants to go out, the respite carer stays 
with the demented person at home. If the family carer needs some quiet time at home, 
the respite carer takes the client out for the day. 

Each client is assigned to his or her respite carer for as long as the service is 
needed. This minimises the confusion that could result from having to develop 
more than one new relationship. Carers receive intensive training initially and 
then continuing training, support and weekly debriefings. This is essential 
because the work is stressful: 

I have sat with a sufferer for six hours...it is a long time when you are with 
omebody who is forgetful, who repeats the same story over and over again, and 
does not let you out of their sight.115 

The success of the training is demonstrated by the low staff turnover of 13 
percent. This compares with a turnover rate of 60 percent in respite care 
services run by other organisations.116 

The Association believes six hours a week is not enough respite care for a 
person with dementia. However, their resources are stretched to the limit and: 

Unfortunately, at the moment, because of funding we have a waiting list of 30 
families needing help. And these people are in desperate situations. Every one
 of them is a deserving case but they cannot be helped at this stage."7 

Respite Care Away from Home 

People with dementia who are living in the community also need access to 
occasional respite care away from home. In the event of a family crisis or the 
family carer becoming ill, dementia sufferers often have nowhere to go except 
a hospital acute ward. This, the Inquiry was told, is absolutely inappropriate.
Staff in public hospitals and acute hospitals do not know how to handle somebody
 with dementia and because the behaviour is so paradoxical they often think the 
person with dementia is just being difficult.118 

Human Rights and Equal Opportunity Commission Page 529 

Lack of flexibility in the services available can have serious consequences for 
dementia sufferers. For example, a family carer who had to go away for 
several months was placed in a very difficult situation: with no temporary 
respite care available, her only option was to commit her mother permanently 
to a nursing home or hostel.119 

Country people are especially disadvantaged in this regard — as in so many 
areas of mental health.120 

Information for Carers 

Family carers also need information and education: 

That's information about the diagnosis and likely process of the disease, so they
 can understand what's going on and know what to expect. They need to handle 
difficult behaviours, [and to know] how to communicate with a confused person, 
how to prevent or defuse difficult situations, how to organise respite care, 
how to make necessary legal arrangements, how to use the system which is a very 
confusing thing — ultimately how to find appropriate residential care when the 
need arises.121 

Information about support services, like the services themselves, is generally 
inadequate, and in many areas non existent and poorly coordinated. There is 
usually no central point of contact and carers must fight their way through a 
maze trying to find out what services are available and how to use them: 

Knowledge is usually restricted to the knowledge of the person you go to, so if
 they are a Federal government employee they will know about Federal services 
and they will not necessarily tell you about State services or local services 
and vice versa.122 

One solution recently developed is a brokerage model, a one-stop shop for 
information, referrals and services.123 Brokerage offices, funded by HACC, 
purchase and coordinate whatever services are needed to prevent individual 
dementia sufferers from having to be institutionalised for as long as possible. 

[The service] needs to be accessible... It needs to be user-friendly so that 
people don't feel intimidated from getting help. It needs to be flexible so that
 for one person the critical point about keeping them in their own home is if 
they can get meals. [In another case a person might need] someone to do some
maintenance on their home so they can get up and down the steps.124 

Alzheimer's Association 

The Alzheimer's Association is the main support group representing carers and 
families of people with dementia. It has a national office and state branches 
which provide public education programs, library resources, information and 

Page 530 Mental Illness Inquiry 

counselling for sufferers. It runs support groups for carers and in one State, 
Western Australia, provides an in-home respite service. The Queensland Branch 
provides respite by operating two daycare centres. The Tasmanian Branch 
operates the Flagstaff Gully nursing home. (The Association also organises 
events such as national conferences on Alzheimer's disease.) 

One of the Association's main functions is as an advocacy and lobby group on 
behalf of families of dementia sufferers. Because of the effects of the illness, 
the vast majority of people with dementia cannot be their own advocates; but 
their families are so exhausted by caring for them that they rarely have time or 
energy left over to perform this role.125 

The Association claims an expertise in dementia management which is rare 
even in government health and aged services departments. This means the 
Association makes an extremely important contribution by helping to develop 
policies on dementia.126 

Like other mental illness support groups, the Association relies on volunteers, 
but in most States it also receives government funding toward the cost of 
administration and provision of direct services. Like other groups, it faces a 
heavy demand for its services. Unlike other groups, however, the Association's 
clientele is growing rapidly, because the ageing of the population means the 
incidence of dementia is increasing much more rapidly than most other mental 
illnesses. 

Ironically, just when demand for its services is surging, the Alzheimer's 
Association may lose part of its already modest funding. The Association's 
national office received $300,000 as a four-year seeding grant under the Federal 
Government's Community Organisations Support Program. However, the 
Inquiry was told that grant would cease in mid 1993, and the Government had 
decided not to provide ongoing funding after that date. Unless an alternative 
source of funding is found, this will mean the end of the Association as an 
effective national voice on behalf of many people with dementia and their 
carers. 

Policy Issues Emerging from the Evidence 

Inconsistent and Contradictory Provisions 

The lack of uniform mental health legislation (see Chapters 3,4 and 29) or of 
portable services between the States is especially relevant for dementia sufferers 
because elderly people frequently live interstate from their relatives. Provisions 
for guardianship, power of attorney, testamentary capacity and even the 

Human Rights and Equal Opportunity Commission Page 531 

definitions of mental illness vary from state to state. Relatives trying to cope 
with this face enormous difficulty, frustration and expense. 

The former Department of Health, Housing, and Community Services recently 
conducted the second stage of its Mid Term Review of the Aged Care Reform 
Strategy. This stage aims to develop 'integrated approaches to dementia 
care'.128 Under this strategy, a five-year National Action Plan for Dementia 
Care was announced in 1992.129 This Plan aims to make all aged care 
services more responsive to the needs of dementia sufferers and their carers. 
It should bring about improvements in terms of broad policy and planning. 
However, the Alzheimer's Association believes that implementing changes at 
a practical level requires an independent, well-resourced national task force on 
dementia, analogous to the National Task Force on AIDS.130 Proponents of 
the task force point out that dementia is an incurable disease affecting 
numerically far more people than AIDS. An independent task force might prove 
more amenable to the proposition that dementia sufferers in residential care 
should be separated from non-dementing elderly people. Such a task force 
would also be less likely to overlook the 10 percent of dementia sufferers who 
are not elderly.131 

People who are elderly and also mentally ill are particularly vulnerable. As is 
common — but inexcusable — for people with dual 'disabilities', they tend to 
fall between government departments: in this case between health (usually 
State) and aged care (Federal). One psychogeriatrician working in a State 
psychiatric hospital and attempting to get a community care program off the 
ground told the Inquiry: 

The State really would like us to perhaps be entirely Federally funded, and Federal 
funded departments do not want to know us either: they say we are State, so which 
side do we go to?... HACC simply do not want to know us because we are seen as a 
State government department even though our particular projects...are entirely 
community based.132 

Dividing responsibility for aged health services between the Commonwealth and 
the States has led to excessively rigid and complex guidelines and arbitrary 
distinctions. For example, whether a dementia sufferer ends up in a State or 
Commonwealth nursing home is purely a matter of luck. Yet their rights and 
the standard of care they receive may be quite different, because 
Commonwealth protections do not apply to State facilities.133 

The conceptual and formal division between health and aged services also 
creates difficulties in the admission process for nursing homes. The gatekeeper 
to Commonwealth nursing homes in most areas is the Geriatric Assessment 
Team (GAT) from the Department of Health, Housing, Local Government and 

Page 532 Mental Illness Inquiry 

Community Services. One problem, already noted, has been the policy of 
refusing nursing home admission to former psychiatric patients; this has 
recently changed. Another problem is that psychogeriatricians are not allowed 
to authorise the transfer of their own patients from hospital into a nursing home 
without approval from a GAT or a geriatrician.134 To get this approval, 
psychogeriatricians often feel compelled to overemphasise their patients' 
physical problems, since GATs, like the Resident Classification Instrument, 
tend not to attach enough weight to dementia as a criterion for admission to 
residential care.135 

Witnesses to the Inquiry suggested that placing psychogeriatrics and all other 
aged services under one budget would allow more comprehensive and equitable 
services.136 At the very least, coordination between services would be improved! 

Confusion about definitions can result in services being denied to the people 
who need them most. In one part of Sydney, nurses funded by HACC were 
assigned to provide services for the confused and disturbed elderly, but told 
they were not to see anyone with a mental illness, eg depression or paranoid 
states. Since many people with dementia also suffer from those other conditions, 
the nurses were in a quandary as to whether they were allowed to assist 
or even see these elderly people.137 

Policy-making in the field of mental illness is frequently characterised by a 
failure to consult and inform interested groups and individuals when changes 
are proposed. In this respect, dementia appears to have recently fared better 
than other areas of mental illness. The Federal Government has consulted 
psychogeriatricians and the Alzheimer's Association on recent initiatives in aged
 care, such as the Mid Term Aged Care Review and the nursing home Charter 
of Rights and Responsibilities.138 However, at a State level it appears that lack 
of consultation is still a major problem. In Western Australia, for example, there
 is no mechanism for the State's two psychogeriatricians to put their views to anyone
 involved with policy or service planning.139 In NSW extensive consultation preceded 
the decision to place dementia sufferers under the Guardianship Act rather than the
 Mental Health Act. Even so, this has resulted in some perceived shortcomings: 

We find, for example, people who are dementing and aggressive may be harmful to their
 family and.. .they're not a mentally ill person as defined by the act. So that if they 
haven't got a single hallucination or delusion the Mental Health Act can't be used.140 

Human Rights and Equal Opportunity Commission Page 533 

Funding 

In the competition for scarce mental health resources, the elderly mentally ill 
take low priority. There is an acute shortage of services for treatment, 
accommodation and support for family carers. Unless we rapidly develop 
effective planning to take account of the ageing population, the shortage will 
become much worse. 

Throughout the mental health system, resources are overwhelmingly concentrated 
in institutions instead of in the community. As noted elsewhere in this 
report, 80 percent of mental health monies are still tied up in hospitals and 
other institutions, even though 95 percent of the mentally ill now live in the 
community.141 The distribution of the aged care budget similarly focusses on 
institutions. Yet at least half of all dementia sufferers live at home, and more 
would if the support services were there to allow it.142 

The Federal Government spent $1.5 billion in 1990-91 on nursing homes, 
where (according to expert evidence cited earlier) at least 60 percent of 
residents have some degree of dementia. This represents $21,400 per resident. 
Expenditure on aged hostels was $351 million. About 25 percent of residents 
in these hostels have dementia, which represents $7,970 per capita.143 

Expenditure on HACC programs, which allow people to continue living in the 
community, was only $279 million. The number of people using HACC was 
about 200,000, of whom an unknown proportion have dementia. The per capita 
expenditure for people living at home and using those services was therefore 
only $1394.144 

Evidence to the Inquiry strongly suggests that many dementia sufferers are 
having to make do without any assistance from government services at all. 
Roughly four out of five personal services to the elderly are provided by family 
or others in the community without cash exchange — in the private economy 
which is not reflected in the national accounts.145 In South Australia, for 
example, there are an estimated 11-12,000 people with dementia. Some 4000 
are in residential facilities; but of the 8000 who are not, only 2000 are on the 
records as using dementia services. What is happening to the other 6000, 
apparently no one knows.146 

Providing more resources for dementia sufferers in the community cannot come 
about merely by redistribution. The nursing homes and hostels do not appear 
to have funds to spare; in fact, some of the practices which are most unacceptable 
from a human rights perspective stem directly from insufficient funds. So the total 
funding for dementia and other mental illnesses in the elderly must be 

Page 534 Mental Illness Inquiry 

increased. At present there is some disagreement on how much money is 
actually spent on dementia care: the Federal Government cites a figure of 
$1,045 billion in 1990-91,147 but one expert witness called this 'outrageous 
sleight of hand': 

They have used the figure of 60 percent of residents having dementia...to say that 
60 percent of the total nursing home budget is therefore being applied to dementia 
services. And they have done the same for hostels. The fact that most of these residents
 were admitted for reasons other than dementia...appears to be irrelevant. The Department 
can say that $1,045 billion is being allocated to dementia services whereas in fact the
bulk of this sum is spent on the treatment and management of physical conditions.148 

Home and Community Care (HACC) Funds 

Dementia services, like other aged care services, are mainly funded by the 
Federal Government — through nursing homes and hostel subsidies and through 
the HACC program. The Alzheimer's Association expressed concern to the 
Inquiry about two aspects of HACC: the distribution of funds through State 
governments, and the possibility of HACC devolving entirely to State control 
in the future. 

HACC provides funds to match contributions from each State on a dollar-fordollar 
basis. This means federally-funded services for the elderly are only 
provided if a State government is prepared to allocate an equal amount. 
Depending on the priorities of different governments, this produces gaps, 
duplications and inequities between States.149 The Alzheimer's Association 
maintains that aged services are a Commonwealth responsibility which should 
be funded directly by the Commonwealth to ensure, as far as possible, that all 
elderly Australians receive the standard of service to which they are 
entitled.150 

The possibility of HACC being handed over entirely to the States is viewed 
with similar misgiving by dementia support groups, which believe that the 
uneven record of State governments in using HACC funds casts doubt on their 
commitment to adequate dementia services in the future. If HACC is devolved 
to the States, state legislation will be needed to safeguard the rights of those 
affected by dementia.151 

The Need for Specific Aged Psychiatric Services 

Australia has very few designated psychogeriatric services. Elderly people with 
mental illness are dealt with by the general adult psychiatry services, which 
sometimes do not adequately understand that problems can present differently 

Human Rights and Equal Opportunity Commission Page 535 

in the elderly. This can result in treatable conditions like depression remaining 
undiagnosed and untreated due to ignorance. 

The Inquiry was told that elderly people of non-English speaking backgrounds 
are particularly at risk of their mental illness going undiagnosed. This means 
no attempt is made to manage their condition until it reaches crisis point. A 
community worker from the Migrant Resource Centre in Hobart gave this 
example of a 74-year-old man of Eastern European background: 

I was contacted by [his] landlord... I tried to go and find the gentleman; we could 
not find him. The landlord let me inside so I [found out] his name and nationality,
 contacted the ethnic group, all possible services. The gentleman was found seven days
 later in a local park, probably [had been] there for the last seven days. He was 
totally unable to find his way home, [after] not eating for definitely several days...
These examples are happening 
too often. It is very difficult for me to believe that nobody could recognise [the
 problem] earlier. I do not know how often examples like this happen in the Australian
 community, but they are happening much too often in [the] non-English speaking one. It
 is just that nobody is prepared to sit and spend enough time to recognise how deeply
disturbed these people are.152 

Staff may also find younger patients more interesting to work with: 

they would much prefer a person with a personality disorder or an acute schizophrenia 
to some elderly person who may be frail and have physical problems who also is acutely 
depressed or anxious.153 

Many elderly people have physical problems which make it difficult for them 
to visit doctors, outpatient clinics or community health centres. They need 
home visits, which they often do not get — either because of staff shortages or 
because their GPs do not recognise the problem.154 

These problems all highlight the need for special psychogeriatric services. 
Witnesses to the Inquiry favoured a model based on integrated multidisciplinary 
teams working in the community and also with patients in hospitals, nursing 
homes and hostels. The teams- should link in with aged medical services, 
including geriatric services but especially GPs, who are the main providers of 
health care to the elderly. One community team would be needed to cater for 
each 20-25,000 aged people in a particular area. The team would coordinate a 
range of facilities including outpatient services, acute, rehabilitation and long-stay 
hospital beds, as well as assessment and care in patients' homes.155 A 
few integrated psychogeriatric services have recently been established in capital cities:
 on Sydney's North Shore and in St George in the south; in Melbourne and in Adelaide. 
But the Inquiry was told they are 'very embryonic and resisted by a lot of people'.156 

Page 536 Mental Illness Inquiry 

Research, Training and Staffing for Mental Illness in the Elderly 

Considering the magnitude of the challenge posed by dementia, Australia is 
disastrously deficient in training and research to meet it.157 For a disease 
which has the potential to cripple the health budget, the funding for research 
on preventing dementia is woefully inadequate: in 1991-2 the total expended by 
the National Health & Medical Research Council for research on dementia was 
less than $600,000. This compares with $10 million spent on cardiovascular 
disease, $10 million on AIDS and $11.8 million on cancer research.158 One 
leading dementia researcher in 1989 said he spent one-third of his time trying 
to raise money instead of working on his research.159 

One limitation on research and also on the development of special psycho-
geriatric services is a shortage of health professionals trained in psychogeriatric care. 
Expert evidence to the Inquiry indicated that the entire country has fewer than a dozen 
practising psychogeriatricians, whereas Britain, for example, has about 200. 160 At its 
Tasmanian hearings the Inquiry was told that State had only one psychogeriatrician, whose
 responsibilities covered the southern part of the State. There is not one psychogeriatrician 
in Queensland.161 Western Australia has only two — the same number it had in 1980.162 

Psychogeriatrics is not a particularly attractive area for doctors, being 
one of the most personally demanding and difficult areas of medical practice. It is low tech,
 depending on the good nature and skills of dozens of workers, and hence does not attract the
 headlines and photo opportunities of other areas of clinical practice.163 

For most old people their only contact with the health system is the local GP. 
But doctors receive virtually no training in psychogeriatrics. Many doctors 
simply do not know how to detect mental disorders in the elderly, much less 
how to treat them.164 

This evidence from experts was reinforced by a 1990 study of general 
practitioners' ability to detect dementia and depression in elderly patients.165 
The doctors correctly diagnosed dementia in the majority of patients affected, 
but only managed to detect 20 percent of patients affected by depression. This 
failure is extremely important. Depression is almost always treatable — but 
only if it is recognised. 

Doctors themselves say they feel frustrated when faced with dementia — given 
their lack of training. Many are concerned about the difficulty of making a 
clear diagnosis or of managing a progressively deteriorating condition. Equally 

Human Rights and Equal Opportunity Commission Page 537 

difficult is knowing how to help families cope with a dementing relative. GPs 
need training in all these areas.166 

Ignorance among government policy-makers helps perpetuate the poor state of 
knowledge among GPs: 

Recently there was a paper put out by the National Health and Medical Research Council titled 
General Guidelines for Medical Practitioners on Providing Information to Patients. We noted that 
there was not one reference in those guidelines as to how to deal with someone with dementia. Again,
 [in] a recent publication — admittedly it is only at draft stage — which is titled Patients' Rights
 and Responsibilities, which is something being undertaken by the WA Government, there was also no
 mention in the document as to how people with dementia could be dealt with. In other words, there 
as no provision for people who need advocates.167 

Similarly, the Federal Government's guidelines for nursing homes (published 
in 1987) contain not one express reference to dementia.168 This is extraordinary, given the numbers 
affected. The more recent guidelines on standards for aged care hostels do mention dementia.169 

According to the Royal Australian and New Zealand College of Psychiatrists170 
more psychiatric nurses skilled in dealing with the elderly are urgently required. Education about
 mental illness in the elderly is also needed 
for other workers, especially staff of nursing homes, hostels, daycare centres 
and also boarding houses and retirement villages. Thousands of people, 
including many volunteers, provide direct care in those facilities with very little education or 
information about dementia or the other conditions affecting their clients. Aged care work is poorly
 paid, highly stressful, physically taxing and accorded little prestige.171 Not surprisingly, the people
 who do it have a high burn-out and attrition rate caused by overwork, low morale, frustration, anxiety, 
anger and guilt.172 Maltreatment of nursing homes patients may be at least partly attributable to the high 
stress on staff.173 Financial remuneration is one factor, but in the absence of resources to raise salaries,
 administrators should recognise staff contributions, and meet their needs for training, information, 
counselling and adequate staff levels.174 

Human Rights 

Apart from ignorance, there is another reason why the mental health needs of 
the elderly are constantly neglected. It is prejudice — the idea that old people 
are disposable items, no longer useful and not worth spending money or energy 
on. It is the attitude that old people are not entitled to quality of life, because getting sick,
 feeling depressed and losing one's memory are just natural parts 

Page 538 Mental Illness Inquiry 

of getting old which must be expected; because they are old and going to die 
anyway; or because they are not assertive enough to complain:175 

Visiting one day I found her in a wheelchair being pushed along a long draughty corridor, her hospital
 gown hitched above the pubic area and the blanket which was meant to cover her flung in a haphazard manner
 around her neck... Another time I arrived to find my mother tied in a chair, alone in a large room, again 
uncovered and she was hallucinating. I thought she was dying and tried to get help but nobody took any notice
... She was treated like this because she was a person of no account.176 

In contrast, the same person was later cared for by staff who respect their 
elderly patients: 

Eventually I found an excellent nursing home... She was well cared for without any sedation, managed with
 kindness and firmness and a lot of attention and care. The example of an excellent matron who was active
 in supervising and helping and a small team of experienced senior sisters who liked old people and had
 been there many years, seemed to influence all the other members of the staff.177 


The successful Lefroy Hostel for dementia sufferers in Perth maintains that 
attitudes are more important than formal qualifications in selecting the right 
staff.178 

Older people are generally vulnerable to neglect and abuse, whether physical, 
psychological or economic. Australian and overseas studies indicate that 3-5 
percent of the elderly become victims of abuse.179 

The elderly mentally ill are entitled to the same human rights as other people 
who are vulnerable and in need of protection. Those who come from Aboriginal 
or non-English speaking backgrounds are especially disadvantaged.180 (See 
Chapters 23 and 24 respectively for evidence relating specifically to the needs 
of Aboriginal and Torres Strait Islander people and of people from non-English 
speaking backgrounds.) 

Recognising the particular vulnerability of elderly people in residential care, 
Australia has at least addressed their basic rights in standards and the nursing 
home Charter. However, evidence to the Inquiry clearly established that for 
many elderly mentally ill people, especially those with dementia and depression, 
those rights are being consistently violated. 

Many elderly people rely on family members to be their advocates, but these 
carers already have their hands full trying to meet all the immediate needs — 
partly because the support services are so inadequate. Concern for the human 
rights of the elderly mentally ill must also, therefore, extend to the basic 
rights of their carers
 — if protection of their rights is to be effective. 

Human Rights and Equal Opportunity Commission Page 539 

The Inquiry has deliberately sought to identify the most positive models of 
caring for people with dementia, either in residential facilities or living at 
home. Those models show that dementia, like other mental illnesses, can be 
managed successfully without compromising protection of human rights. 
Facilities such as those we have identified in this chapter are encouraging — 
but pathetically few in number.181 They must be replicated, with adaptations 
where necessary, so that all dementia sufferers can be treated with the respect 
our older Australians deserve. 

Page 540 Mental Illness Inquiry 

1. Roberta Gripton, Alzheimers Association (Western Australia). Oral evidence, 
Perth 12.2.92, p347. 
2. See Chapter 3 — Definitions and Conceptions of Mental Illness. 
3. Prof Henry Brodaty, psychogeriatrician and Alzheimers Association Federal
 President. Oral evidence,
 Sydney 19.6.91, p263. 
4. ibid, p262. 
5. Dr Jacob Mathew, psychogeriatrician. Oral evidence, Hobart 13.11.91, p266. 
6. Brodaty, op cit, p264. Also Lynette Chester, President, Alzheimer's
Association (Western Australia). 
Oral evidence, Perth 12.2.92, p346. 
7. Brodaty, op cit, p263. 
8. Raphael Chapman, Community Accommodation Support Service (Adelaide). 
Submission, Fritz and White Bread,
 Appendix 3, p4. 
9. Prof John Snowdon, psychogeriatrician. Oral evidence, Sydney 20.6.91, p511. 
Also Dr Stephen Tycehurst,
 psychogeriatrician. Oral evidence, Newcastle 9.7.91, p831. 
10. Dr John Tooth, psychiatrist and President, Alzheimers Association (Tasmania). 
Oral evidence, Hobart
 11.11.91, p41. 
11. Brodaty, op cit, p263. 
12. J Snowdon, 'Psychiatric services for the elderly,' Australian and New Zealand 
Journal of Psychiatry v21,
 1987, pi32. 
13. H Brodaty, 'Psychiatric co-morbidity in Alzheimer's Disease', Proceedings of 
the Second National Conference,
 Alzheimer's Association Australia, Adelaide 1992, ppll-13, atpl3. 
14. Snowdon, op cit (ANZJP), pl32. 
15. AS Henderson and S J Rosenman, 'Psychogeriatrics (Part 1: Psychiatric illness
 in late life)', in P Beumont and R Hampshire (eds), Textbook of Psychiatry,
 Blackwell Scientific Publications, Melbourne 1989, p222. 
16. Snowdon, op cit (oral evidence), p511. 
17. Henderson and Rosenman, op cit. 
18. Brodaty, op cit (oral evidence), p264. 
19. id. 
20. ibid, p265. 
21. M Pinkerton-James, The Elderly as Victims of Crime, Abuse and Neglect 
(Trends & Issues No37), Australian Institute of Criminology, Canberra 1992, p4. 
Pinkerton-James cites K Pillemer and D Finkelhor,
 'The prevalence of elder abuse: A random sample survey,' The Gerontologist, 
v28 Nol, pp51-57. 
22. Advocacy for the Aged, Queensland. Evidence provided to the Inquiry. 
23. Snowdon, op cit, p516. 
24. Brodaty, op cit, p276; Snowdon, op cit, p514. 
25. Mathew, op cit (oral evidence), p264. 
26. B Price, 'Education for caring — no longer a privilege', Proceedings
 of the Second National Conference, Alzheimer's Association Australia, Adelaide 1992, p6. 
27. id. 
28. An innovative, much more active approach has been taken by a group in
 Christchurch, New Zealand, where a mutual support group for people in the
 early stages of Alzheimer's disease has operated for two years. The group
 meets to talk about the difficulties faced by 

Human Rights and Equal Opportunity Commission Page 541 

dementia sufferers, including problems they feel unable to discuss with their 
family members. They share ideas for coping with failing memories, and encourage 
each other to accept help or even make the transition into residential care. 
The group cannot arrest the progress of the disease, but it has been successful in 
enhancing the members' self esteem and ability to cope with their condition. 
E Peach and G Duff, 'Mutual support groups: A response to the early and often
 forgotten stage of dementia', Proceedings of the Second National Conference, 
Alzheimer's Association Australia, Adelaide 1992, pp61-62. 

29. Price, op cit, p7. 
30. Department of Community Services and Health, Charter of Residents' Rights 
and Responsibilities in 
Approved Nursing Homes, AGPS, Canberra 1991. 
31. Gripton, op cit, p352. 
32. ibid, p349. 
33. R Lefroy, 'The special hostel for care of people with dementia', Medical 
Journal of Australia, v55 No3, 5 Aug 1991, pl41. See also J Callum, 'Quality 
of survival in an ageing society', Proceedings of the Second National Conference,
 Alzheimer's Association Australia, 1992, pl6. The Commonwealth Government's 
policy of integrating the demented elderly with the cognitively well is not 
explicitly stated; rather the issue of separating these two groups of patients 
is consistently not addressed. See for example Department of Health, Housing 
and Community Services, Aged and Community Care Budget Initiative 1A, 1991; 
or the Department's Aged Care Reform Strategy, Mid Term Review 1990-91, AGPS, 
Canberra 1991, pi77. 
34. Paul Wilmot, Anglican Homes (Western Australia), Presentation to the then 
Minister for Aged, Family and Health Services, 24 May 1991. 
35. Snowdon, op cit, p517, referring to Rozelle Hospital. 
36. Tycehurst, op cit, p819. 
37. Mathew, op cit, p266. 
38. Prof John Snowdon. Evidence to the Inquiry subsequent to the formal hearings. 
39. Brodaty, op cit, p263. 
40. Mathew, op cit, p265. 
41. Tooth, op cit, p42. 
42. Tycehurst, op cit, p819. 
43. Mathew, op cit, p265. 
44. ibid, p271. 
45. Dr Neville Hills, psychogeriatrician. Oral evidence, Perth 12.2.92, p367. 
46. Pinkerton-James, op cit, p4. 
47. Snowdon, op cit, p511. 
48. Mathew, op cit, p272. 
49. Tooth, op cit, p45. 
50. Snowdon, op cit, p511. 
51. Tooth, op cit, pp42,48. 
52. id; and Mathew, op cit, p267. 
53. The old RCI provided 12 criteria for measuring the level of nursing assistance 
needed by a patient, and only one of the 12 referred to 'behaviour'. In the new 
instrument, three of 

Page 542 Mental Illness Inquiry 

the 14 criteria refer to behavioural difficulties: physical aggression, verbal
 aggression and other behavioural problems. 

54. The owner of one nursing home that meets all the Commonwealth's outcome 
standards has been quoted in the press saying the funding formula means he 
cannot afford to take dementing or psychogeriatric patients. J Chandler, 
'Standards high, but income of home isn't,' The Age 1 June 1992, pl5. 
55. The nursing home standards, introduced in 1987, are contained in the
 National Health Act, s45D. They are interpreted in a longer document used 
by monitoring officers as a reference: Living in a nursing home - Outcome 
standards for Australian nursing homes, AGPS, Canberra 1987. Hostel 
standards, formulated in 1990 under slOF(l) of the Aged or Disabled Persons 
Homes Act, are set out in Keeping the Quality in Hostel Life, AGPS, Canberra 1990. 
56. Department of Community Services and Health, Charter of Residents' 
Rights and Responsibilities in Approved Nursing Homes, and Charter of 
Residents' Rights and Responsibilities in Approved Hostels. 
57. Brodaty, op cit, p266. 
58. Pat Jones, Alzheimer's Association. Oral evidence, Sydney 19.6.91, p268. 
59. Lefroy, op cit, pl41. 
60. Brodaty, op cit, p265. 
61. Jones, op cit, p269. 
62. The monitoring scheme appears to be successful in compelling homes to 
raise their standards. Dr John Braithwaite and his colleagues at the 
Australian National University have been studying the effectiveness of 
Commonwealth regulation of nursing homes for five years. Their interim 
report says facilities identified as poor performers in a 1987 survey have
 since mainly improved their service. Braithwaite et al, The Contribution 
of the Standards onitoring Process to the Quality of Nursing home Life: 
A Preliminary Report, Department of Community Services and Health, Canberra 
1990. According to press reports, the Commonwealth has threatened 22 Victorian 
nursing homes with funding cuts over the past two years as a result of monitoring 
teams observing sub-standard conditions. J Chandler and D Wilson, 'Threats 
improve nursing home care,' The Age 1 June 1992, pi. 
63. Chester, op cit, p350. 
64. Advocacy for the Aged, Queensland. Submission, pi. 
65. 'Beating "was part of cause of death"', Canberra Times, 3 June 1992. 
66. Advocacy for the Aged, op cit, p2. 
67. Chester, op cit, p350. 
68. Brodaty, op cit, p264. 
69. Mathew, op cit, p269. 
70. For example Snowdon, op cit, p511. 
71. Mathew, op cit, p269. 
72. R Lefroy et al, 'The care of people with dementia: Is there a need for a 
special hostel?', Australian Journal on Ageing, v9 No4, 1990, p26. 
73. Dr John Tooth. Evidence submitted to the Inquiry after the close of formal hearings. 
74. Anne Kelly, Flagstaff Gully nursing home. Oral evidence, Hobart 12.11.91, p226. 
75. Tooth, op cit (oral evidence), p46. 

Human Rights and Equal Opportunity Commission Page 543 

76. ibid, pp43,46. 
77. id. 
78. Peter McHale, Lefroy Hostel. Oral evidence, Perth 12.2.92, p360. 
79. J Tooth, 'Design for residential care', Proceedings of the Second National Conference,
 Alzheimer's Association Australia, Adelaide 1992, p23. 
80. McHale, op cit, p269. 
81. Paul Wilmot, Anglican Homes. Letter, 16 April 1992. 
82. Tycehurst, op cit, p828; Snowdon, op cit, p511. Formal evaluation of CADE's 
operations also shows the system significantly improves elderly residents' health 
and quality of life: R Fleming and J Bowles, 'Successful ageing in long-term care 
for the dementing,' Proceedings of the 25th Annual Conference of the Australian 
Association of Gerontology, Canberra 1990, pp81-84. 
83. Lefroy et al, op cit, p28. 
84. Department of Community Services, Nursing Homes and Hostels Review, AGPS, 
Canberra 1986. Cited in J Snowdon and S Mackintosh, 'Depression and dementia
 in three Sydney hostels', Australian Journal on Ageing v8 No4, 1989, p24. 
85. Lefroy et al, op cit, p28. 
86. National Anglican Caring Organisations Network, 'Resolution of Concern'. 
Submitted to HREOC 8 May 1992. 
87. Brodaty, op cit, p263, and in evidence to the Inquiry subsequent to the formal hearings. 
88. Dr Anthony Jorm, Social Psychiatry Research Unit, Australian National University.
 Oral evidence, Canberra 18.3.92, pl8. 
89. id. 
90. Brodaty, op cit, p276. 
91. Tooth, op cit (oral evidence), p41. 
92. The Alzheimers Association in WA estimates the cost of providing a home care 
service to one dementia sufferer one day per week at $5000 per year. Ideally 
each sufferer should receive two or three services per week, which would 
cost $10-15,000 per year. The cost of ordinary nursing home care is $27,000 per
 year; and even in special dementia hostels it is $23,000 per year. A very large 
number of dementia sufferers use no services at all, which keeps the present 
overall cost of services to people living at home low. The Alzheimers Association
 says this non-use is unmet need: the Government is keeping costs down by failing
 to provide the services people need. Similarly, the cost of an intensive domiciliary
 service provided to dementia sufferers in Adelaide was estimated in 1989 at $115 per week,
or just under $6000 per year. L J Mykyta and G Lovell, ' Community care for dementia 
sufferers', Australian Journal on Ageing v8 No3, 1989, p19 
93. Jorm, op cit, pl4. 
94. Brodaty, op cit, p267. 
95. Lorraine Beard, carer (NSW). Letter, 8 July 1991. 
96. T Egan, 'Dad got old, so they dumped him,' Sydney Morning Herald 27 March 1992, p4. 
Egan quotes an American estimate of up to 70,000 elderly parents abandoned in 1991. 
97. Brodaty, op cit, p265. This is also supported by Pinkerton-James, op cit, p4. 
98. Brodaty, op cit, p282; Lynette Chester, letter, 15 April 1992; Paul Wilmot, 
letter, 16 April 1992. 
99. Jones, op cit, p267. 

Page 544 Mental Illness Inquiry 

100. Chester, op cit, p345. 
101. id. 
102. Brodaty, op cit, p279. 
103. M Hueke, 'A model for the management of people with diagnosed dementia in country 
areas', Australian Journal 
on Ageing v9 No4, 1990, p34. 
104. Tooth, op cit, p39. 
105. Brodaty, op cit, p277. 
106. Tooth, op cit, p40. 
107. Even the provision of nursing home and hostel beds is problematic — for example, the 
New England Health Region of NSW has a nursing home and hostel deficit of 277 places, 
based on the Commonwealth's recommended ratios of 40 nursing home and 60 hostel beds 
per 1000 people over age 70. Hueke, op cit, p34. 
108. Zophia Pakulski, Migrant Resource Centre. Oral evidence, Hobart 13.11.91, p285. 
109. F Jordan et al, 'Quality care and best practice for people with dementia', 
Proceedings of the Second National Conference, Alzheimer's Association Australia, 
Adelaide 1992, p3. 
110. Mathew, op cit, p273. 
111. id; and Gripton, op cit, p349. 
112. Jordan et al, op cit, p5. 
113. Jorm, op cit, pl8. 
114. Gripton, op cit, p350. 
115. ibid, p353. 
116. P O'Connor and E Kingsley, 'When all else fails: In home respite may be the answer',
 Proceedings of the Second
 National Conference, Alzheimer's Association Australia, Adelaide 1992, pp31-33. 
117. Gripton, op cit, p348. 
118. ibid, p349. 
119. ibid, p355. 
120. Chester, op cit, pp346,350. 
121. Brodaty, op cit, p267. 
122. Jones, op cit, p269. 
123. id. 
124. Brodaty, op cit, p278. 
125. ibid, p264. 
126. Dr John Tooth. Letter to the Chairman of the Inquiry, 5 March 1992. 
127. Chester, op cit, p350; Franceska Jordan, letter, 13 February 1992. 
128. Department of Health, Housing and Community Services, Mid-Term Review of the Aged
 Care Reform Strategy - Stage 2, 1991-92. Background Paper, 30 Sept 1991. 
129. Health Care for All Australians: 1992-93 Reforms (Budget Related Paper No8), p29. 
130. Brodaty, op cit, p264. 
131. Prof Henry Brodaty for the Alzheimer's Association. Submission, p2. 
132. Hills, op cit, pp377-378. 
133. Brodaty. Oral evidence, Sydney 19.6.91, p265; Jones, op cit, p269; Chester, op cit, p350. 

Human Rights and Equal Opportunity Commission Page 545 

134. Hills, op cit, p366. 
135. Prof Henry Brodaty. Evidence to the Inquiry subsequent to the formal hearings. 
136. Snowdon, op cit, p516. 
137. ibid, p515. 
138. Brodaty, op cit, p274. 
139. Hills, op cit, p372. 
140. Brodaty, op cit, p274. 
141. Dr John Hoult, psychiatrist. Oral evidence, Sydney 20.6.91, p408. Magdi El Hag,
 Victorian Community Managed Mental Health Services. Oral evidence, Melbourne 8.4.91, pl25. 
Lisa Brophy, Association of Mental Health Workers. Oral evidence, Melbourne 9.4.91, p227 
142. Brodaty, op cit, p263; Jones, op cit, pp266-267. 
143. Wilmot, op cit. This is roughly consistent with figures provided by Dr John McCallum
 at the National Centre for Epidemiology (Australian National University): he estimates 
that HACC accounts for 12.4c in each long-term aged care dollar, while residential care
takes 69c. J McCallum, 'Quality of survival in an ageing society', Proceedings of the 
Second National Conference, Alzheimer's Association Australia, Adelaide 1992, p16. 
144. Wilmot, op cit. 
145. McCallum, op cit, pl5. 
146. Alzheimer's Association (SA). Evidence to the Inquiry subsequent to the formal hearings. 
147. A Howe, 'Putting the pieces together — towards a National Action Plan for dementia
 care', Proceedings of the Second National Conference, Alzheimer's Association Australia,
 Adelaide 1992, pl8. 
148. Tooth, op cit (letter to Chairman of the Inquiry, 5 March 1992). 
149. Alzheimers Association (South Australia). Evidence to the Inquiry after the close
of formal hearings. 
150. Brodaty, op cit, p277. 
151. Jones, op cit, p269. 
152. Pakulski, op cit, p285. 
153. Snowdon, op cit, p510. 
154. id. 
155. ibid, p511. 
156. id. 
157. 'Alzheimer's cure key to reducing nursing home patients,' Hospital and Healthcare
Australia v21 No7,
 July 1990, pp 14-15. 
158. Franceska Jordan, Alzheimer's Association. Submission. 
159. Dr John Currie, Mental Health Research Institute of Victoria, quoted in Alan Attwood, 
'Scourge of the aged,' Time Australia, 25 September 1989, p67. 
160. Snowdon, op cit, p509. The number of geriatricians in Australia is half the 
recommended level of the British Geriatric Society, with only ten geriatricians in
 training around the country in 1990: 'Alzheimer's cure key to reducing nursing home 
patients', op cit, pl4. 
161. Mathew, op cit, pp264,275. 

Page 546 Mental Illness Inquiry 

162. Hills, op cit, p367. In November 1992 the Western Australian Government announced 
it will fund a Chair in Psychiatry for the Elderly at the University of WA. 
163. ibid, p368. 
164. Brodaty, op cit, p263; RANZCP, Position Statement on Psychiatric Services 
for the Elderly, p2. 
165. J Bower, A Jorm, S Henderson and P Harris, 'General practitioners' detection of
 depression and dementia in elderly patients', Medical Journal of Australia v153, 
20 Aug 1990, ppl92-196. 
166. Brodaty et al, 'Dementia, doctors and carers', Proceedings of the Second National
 Conference, Alzheimer's Association Australia, Adelaide 1992, p67. 
167. Chester, op cit, p345. 
168. Department of Community Services and Health, Living in a Nursing Home Outcome 
standards for Australian Nursing Homes, AGPS, Canberra 1987. The document does refer
 to 'managing aggressive behaviour': 'The cause of the behaviour should be identified, 
steps taken to alleviate the problem, and the situation reviewed.' However, if the 
problem is dementia, an ordinary nursing home will have difficulty alleviating the problem. 
Similarly, the document mentions the use of restraint on residents' movements: 'Before 
use, all types of restraint, including chemical restraint, must be carefully considered
 and authorised by the resident's medical practitioner... When residents with diminished
 intellectual competence are restrained it is particularly important to involve their [family] 
representative in the decision.' Evidence to the Inquiry suggests the reality in many 
nursing homes falls far short of this considered approach to restraint of elderly patients. 
169. Department of Community Services and Health, Keeping the Quality in Hostel Life, 
AGPS, Canberra 1990. 
170. RANZCP, op cit, p3. 
171. Pinkerton-James, op cit, p5. 
172. Dr Michael Duke, RANZCP. Oral evidence, Melbourne 10.4.91, p347. Also see Bob Price,
 op cit, p6. 
173. Pinkerton-James, op cit, p5. 
174. Jordan et al, 'Quality Care and Best Practice for People with Dementia,'
 Proceedings of the Second National Conference, Alzheimer's Association Australia,
 Adelaide 1992, p4. 
175. Brodaty, op cit, p263. 
176. Thea Waddell, carer. Oral evidence, Sydney 19.6.91, p270. 
177. ibid, p271. 
178. McHale, op cit, p361. 
179. Brodaty, op cit, p265. See also Pinkerton-James, op cit, p4. She cites 
J McCallum, S Matiasz, and A Graycar, Abuse of the Elderly at Home: The Range of the Problem, 
National Centre for Epidemiology and Population Health, Canberra, 1990; also NSW Task
 Force on Abuse of Older People, Abuse of Older People in their Homes, Office on Ageing, 
Sydney 1992. 
180. Brodaty, op cit, p277. 
181. Apart from Flagstaff Gully and Lefroy facilities the Chairman of the Inquiry was also 
impressed by a specially designed home for dementia sufferers recently opened by the 
Salvation Army near Geelong — Kardinia Lodge. 

Human Rights and Equal Opportunity Commission Page 547 

Chapter 18 

HOMELESS PEOPLE 

Mental illness can happen to anyone...all those shuffling lost souls...were once 
somebody's bright-eyed son or daughter.1 

Definitions 

Homelessness among the mentally ill is a very visible and growing problem.2 
Formal definitions of homelessness vary, but the National Inquiry into 
Homeless Children defined it as a lack of shelter that is permanent, adequate 
and secure, together with the vulnerability that lack of shelter brings.3 The US 
Federal Task Force on Homelessness and Severe Mental Illness defined a 
homeless person as someone lacking a fixed, regular and adequate night-time 
residence, or someone whose primary night-time residence is a temporary 
shelter or a place not designed for people to sleep.4 

Some witnesses to the Inquiry considered homelessness to describe not only 
those who sleep the night outside, in refuges, night shelters and empty buildings
 or squats; but also the many thousands now living in sub-standard boarding houses 
and other inadequate, low-cost accommodation.5 

Many of the problems confronting the homeless are certainly faced by larger 
numbers of people who are variously described as 'disaffiliated', or lacking 
social roots in a community. These people may live in cheap single rooms or 
other marginal accommodation.6 

Who and How Many Are They? 

The size of the homeless population in Australia is difficult to estimate 
accurately.7 This is partly because definitions of homelessness vary, but also 
because the erratic lifestyle typical of many homeless people defies attempts at 
measurement. However, in 1985 the Federal Department of Housing and 
Construction estimated that 40,000 Australians slept outdoors, and 60,000 were 
housed inadequately without security of tenure or income.8 

The homeless are not one homogeneous group.9 They include the elderly, the 
young, individual women and men and families. Some may be relatively stable, 
staying for years in a refuge or shelter; others lead very transient lives.10 

Page 548 Mental Illness Inquiry 

However, they have one thing in common: they live in poverty, with little or 
no social support. 

Homeless people suffer a high rate of physical and mental health problems.11 
In a 1991 survey in Melbourne, 90 percent of agencies working with homeless 
adults reported psychiatric illness as a significant problem. Other major 
disabilities included drug and alcohol abuse and dependence, poor nutrition, 
dual disabilities and intellectual disabilities.12 

A recent profile of the homeless mentally ill indicates that 80 percent have been 
unemployed for over 10 years, and most would be regarded as unemployable. 
They are isolated: one-third report no living relatives, and half report no close
 friends. Over half have never married.13 

All receive some form of social security — be it one or a combination of 
sickness, invalid, age or unemployment benefits. However, which pension or 
benefit they receive appears to be unrelated to the severity of their illness.14 

Homeless people with mental illness tend to concentrate in the inner cities, but 
many come from the country or from outlying suburbs — where accommodation 
and services are even more scarce.15 Some 15 percent left school before 
age 12, and 75 percent left by the time they were 16.16 

About 90 percent of the homeless mentally ill are smokers.17 Homeless people 
not only have much higher rates of disease than the rest of the population, they 
have much higher rates of mortality as well.18 A witness from a St Vincent de 
Paul hostel for the homeless told the Inquiry: 

Personal hygiene is a constant concern... Just to encourage them to bathe regularly, 
to change their clothes and to wash their clothes always seems a problem. They are not 
able to cook and eat proper food, and hence why they come to us, I believe, [is] just 
for nutrition.19 

Most homeless mentally ill people fall into two broad groups.20 One group is 
the ageing, destitute, long-term mentally ill. The other comprises younger 
people who are transient — constantly shuttling between hostels, refuges and 
hospitals. 

Over the last 20 years the age profile among the homeless has shifted markedly 
toward the young.21 The Inquiry was told these younger people are more 
likely to be aggressive, less amenable to the rules of agencies or organisations, 
more likely to 'cause trouble' and provoke hostility, and to kill themselves: 
'they are the most distressing group to deal with.'22 

Human Rights and Equal Opportunity Commission Page 549 

It is in the evenings when you go to these centres that these young people come in.
 They have been out in the day wandering around and in many ways nobody can get a 
handle on them. They move up and down the coast of Australia between Sydney, Melbourne 
and Brisbane.23 

Alienation, Isolation, Victimisation and Violence 

Apart from the direct effects on the homeless sufferer, mental illness alienates 
other people. One worker from a Melbourne homeless agency told the Inquiry: 

Just the nature of psychiatric disability is that it is feared by many people. We, 
as workers, find it difficult to come to grips with; people in the community also 
have trouble trying to do that. What that means is that they are ostracised, they 
are alienated, they are isolated, and they are put back into other suburbs, for 
instance, like St Kilda...where, in fact, there's lots of other people there that 
are also vulnerable.24 

Suburbs like St Kilda25 (or Darlinghurst in Sydney or Fortitude Valley in 
Brisbane) thus become 'a big stewpot of all sorts of different people with all 
sorts of different vulnerabilities'.26 This phenomenon increases the pressures 
on each mentally ill person in the area — because it is not only the 'normal' 
community which shuns them: homeless people generally (ie those who are not 
mentally ill) do not understand psychiatric disability and are afraid of it: 

What that means is that the people react in two ways: they either use [the homeless 
mentally ill] as scapegoats, and heighten and feed into what a psychiatric disability 
sufferer is going through; or they actually shun them and turn away and they then become
 isolated. So certainly...having a psychiatric disability in the homeless field or 
scene can be a very scary [experience], a very isolated one.27 

One unfortunate consequence of this prejudice among the homeless population 
is that many mentally ill people prefer to stay on the streets rather than endure 
rejection in a refuge for the homeless.28 

Homeless people's isolation is such that they can get into severe difficulties 
for example, their welfare benefits being cut off) without anyone around them 
realising their plight.29 Witnesses to the Inquiry emphasised the vulnerability 
of homeless people to violence and exploitation: 

They can be preyed upon; some of the elderly people can be beaten up for their money;
 they are ostracised30... Many times they are robbed, assaulted, raped, you name it... 
They are systematically, almost continuously robbed.31 

They are one of the most vulnerable groups in our society, open to being robbed, 
violently treated, sexually abused and especially mistreated in business affairs. 
They are easy prey for anybody, especially those wanting to 'borrow' money or cigarettes.
 And they usually oblige, for their own safety or they're too trusting of people, or 
simply the need for attention and affection... They are confused about their possessions,
 what they own and 

Page 550 Mental Illness Inquiry 

where they've left them, or how much has been stolen from them or taken from them at one
 stage or another.32 

Transience 

Homeless people, especially the mentally ill, typically lead very transient lives. Many are
 caught in a revolving cycle of hospital admissions and discharges.33 

They move between States, from shelter to shelter: 

[They] wander the length and breadth of Australia without any consistent adequate support, 
virtually untouched by anyone (except maybe counter staff at CES, or Department of Family 
Services or Social Security), but [they] somehow have developed a link of homes, in inverted
 commas, throughout Australia...the Salvation Army hostels or St Vincent de Paul hostels, 
because they see them as the only place that really cares for them.34 

Witnesses from the Catherine House women's shelter in Adelaide said their 
clients never stay more than two months in one place:35 

[One] young woman...for a period of 2 1/2 years she'd come back to us on 12 occasions...
because she had nowhere else she could live... Another young woman of 25 who came to us
 was a transient and during five months she visited us seven times, and of the times she 
came to us on two occasions she'd been on the streets, another time living in a squat, 
another time she had come from the parks.36 

The homeless mentally ill frequently rotate between welfare agencies: 

I can remember when I started at Hanover...I went to visit another agency and standing outside
 was this gentleman who was - he had a psychiatric disability. He was very angry, he was yelling
 at a lamp post, playing with the cars. Everyone didn't know what to do. I mean, we were 
literally comatose. We couldn't communicate with this person and he certainly wasn't in a
 position to communicate with us. 

I thought at that stage, oh well, I don't work here, so that is okay. Except two days later
 of course he turned up at Hanover Centre, so I had to deal with it.37 

This restlessness (often caused by mental illness) is a convenient excuse not to 
provide services to homeless mentally ill people, since they are perceived as a 
problem from elsewhere.38 At the same time, transience is virtually imposed 
on some mentally ill people by government services — which send them to 
another area as a way of passing on responsibility.39 

Prevalence of Mental Illness 

If you ask any of the services dealing with homeless people about changes in the 
homeless population over the last ten years, they will talk about the growing numbers
 of homeless people with a psychiatric illness who arrive at their services without 
support or direction.40 

Human Rights and Equal Opportunity Commission Page 551 

The most common mental illness among the homeless is schizophrenia. This 
cruel disease is estimated to affect one in four residents in Sydney's inner city refuges 
for the homeless.41 While this figure is high, it is consistent with studies of inner city 
shelters overseas, which have indicated a prevalence of schizophrenia up to 36 percent.42 

In Brisbane the homeless shelters on any one night probably accommodate as many people 
with schizophrenia as do the psychiatric units of [the two main] hospitals. In Sydney, 
researchers have shown there are more people with schizophrenia using the shelters than
 are using the beds of the three inner city psychiatric units.43 

Homelessness itself is increasing,44 and mental illness is obviously increasing 
among the homeless. A study in Sydney in 1974 found 11 percent of homeless 
men had had at least four psychiatric hospital admissions45 — today that figure 
would be considered extremely low. The National Health and Medical Research 
Council reports that in Australia, the US and Britain between a quarter and half 
of all homeless adults are 'suffering severe and perhaps chronic mental 
disorder'.46 

According to evidence presented on behalf of the Royal Australian and New 
Zealand College of Psychiatrists, 50-75 percent of people in shelters for the 
homeless have histories of major mental illness.47 A 1988 study of homeless 
people in Melbourne indicated over 70 percent had experienced some period of 
mental disorder, and almost half of those had current disorders.48 This 
evidence is also consistent with studies overseas.49 

At the Ozanam House shelter in Melbourne, which accommodates up to 180 
men per night, a survey of long-term residents, who have been there five to ten 
years, found 25 percent have a current psychiatric illness.50 At the Catherine 
House shelter for women in Adelaide, 32 percent of residents have a history of 
mental health problems. (Overall, 75 percent have drug or alcohol problems 
and/or intellectual or psychiatric disabilities.)51 

At Matthew Talbot Hostel for homeless men in Sydney, the psychiatric illness 
rate is estimated at about 30 percent.52 At St Vincent's Hostel in South 
Brisbane the rate is 15-30 percent.53 The Salvation Army's Crossroads agency 
in Melbourne told the Inquiry that during 1990, one-third of the 24,000 people 
requesting help from Crossroads had a psychiatric illness or severe behavioural 
disorder.54 

The magnitude of the problem has been well documented in the past and should not 
require further detailed surveys... Issues now revolve around the adequacy, effectiveness
 and coordination of services for people with a mental illness. These are questions of 
political will rather than of further demonstration of need.55 

Page 552 Mental Illness Inquiry 

Treatment 

The right of these people to first rate treatment and rehabilitation is denied to them. 
I believe it is a disgrace which no caring community should tolerate, if not for 
compassionate reasons, then for selfish reasons.56 

Homeless people need accommodation, but if they have a serious mental illness 
they also need treatment. Many mentally ill people have difficulty obtaining 
treatment, or even recognising that they need it — and the homeless are 
especially disadvantaged in this regard because they have no family or friends 
to give them support.57 As a result: 

These people tend to move in and out of crisis situations, often resulting in them 
either being picked up by the criminal justice system or remaining on the peripheries
 of society. They rely on homeless and crisis agencies to cope until events escalate 
into what could have been an avoidable acute admission.58 

In theory, the policy of deinstitutionalisation means the homeless mentally ill 
should be receiving treatment through community mental health services, with 
hospital admissions for the occasional acute episode. (This approach to 
treatment is now the 'accepted norm', rather than prolonged institutionalisation 
in a psychiatric hospital.) However, as one submission to the Inquiry said: 

Despite their failings, institutions did at least provide food and shelter.59 

On the streets, the mentally ill find neither adequate food nor shelter. Nor are 
they likely to receive treatment for their mental illness. 

The most poverty-stricken group in our community, stricken and alone, lost, eke out 
their days in a monotonous way, often still tormented by the symptoms of florid mental 
illness.60 

Witnesses representing homeless agencies and hostels repeatedly told the 
Inquiry of the difficulties they experience in attempting to obtain or sustain 
treatment for their clients who are mentally ill. One problem which arises 
frequently is that mentally ill residents in hostels or refuges refuse to take their
 prescribed medication. Staff with no mental health training are then forced to confront 
a person who is becoming psychotic. A worker at the Ainsley Village homeless shelter in 
Canberra described a common scenario: 

They will lock themselves in...and when we go up there and they say, 'I do not want to
 see anybody'— in fact we have no powers. We would not force anyone to do anything they 
ould not do. But it gets to the stage.. .where we need some sort of power to — here we go,
 we are talking about human rights here — but to try and force people to take their 
medication.61 

Human Rights and Equal Opportunity Commission Page 553 

Sometimes 'if it is a real crisis', staff from the shelter take the mentally ill 
person to a hospital, only to find the hospital refuses to accept the person as a
 patient. An appalling shuttling process ensues: 

So what we are forced to do in many cases is to pin an eviction notice on their coat 
and leave them in the emergency centre. Well, this is very upsetting for us...to try 
nd force the hospital to take these people. We have done that and they send them back.
 They have sent them back in a taxi. One chap collapsed on the floor; we had to put him 
in hospital, send him back again.62 

In many cases, what I've had to do is put them in a taxi and send them up to hospital.
Many times they've sent them back to me.63 

Even when a hospital does accept a homeless mentally ill person, they have short-term 
[treatment] and the door swings back and we get them back again. 
They go off their medication and we are pleading with the hospital to take them back 
again, and so it goes on.64 

An experienced Melbourne psychiatrist described to the Inquiry the life pattern 
of the thousands of homeless Australians affected by mental illness: 

Most, sadly, cycle backwards and forwards from shelter to hospital back to shelter 
again like some endless game of musical chairs, competing for the few beds available 
and leaving often prematurely from hospital, and often inappropriately, before any 
response to treatment.65 

Despite the difficulty of obtaining treatment, however, many homeless people 
do end up in hospital — at least briefly. (A 1991 study in Western Australia 
found 10 percent of patients discharged from Gray lands psychiatric hospital had 
been homeless before admission; 46 percent had been homeless at some point, 
and 14 percent said they were frequently homeless.66) The disparity between 
the rhetoric and the reality is not so much what happens in our hospitals — but 
the pathetic paucity of services available after discharge. 

Medication 

Many mentally ill people have been prescribed medication to lessen the severity 
of their illness, but non-compliance in taking medication is common. Homeless-
ness increases the chance of non-compliance, because transience makes it 
virtually impossible to maintain a routine. The homeless mentally ill are also 
likely to have difficulty obtaining medication, and they have nowhere to store 
it. Since they lack the support and continuity of family and friends, homeless 
mentally ill people rarely have anyone monitoring whether they are taking their 
medication, or even whether any has been prescribed for them. They may 

Page 554 Mental Illness Inquiry 

wander from refuge to refuge without anyone knowing what treatment they are 
(or should be) receiving.67 

Why Are They Homeless? 

Why some people become homeless and others do not is poorly understood. 
Many factors contribute to the genesis of homelessness, including mental and 
physical health, institutionalisation as a child, socioeconomic status, intelligence, 
education, personality, family and social support, and the prevailing economic and 
social policy climate.68 

Witnesses to the Inquiry generally identified homelessness as the result of 
poverty,69 alienation and the housing crisis, the loss of boarding houses and 
other low-cost accommodation,70 and the inadequate provision and high cost 
of housing for those most in need:71 

For example, in Sydney in 1987 some 28 boarding houses, which had long provided cheap
accommodation in the inner city, were demolished and replaced with expensive units 
[to house] visitors to the Bicentenary. As far as we are aware, no provision was made
 for the occupants of the boarding houses.72 

Does Mental Illness Cause Homelessness? 

A major American study of the health of homeless people found that homelessness 
and mental illness are causally related.73 Mental illness can directly or 
indirectly lead to homelessness — either through deinstitutionalisation or simply
 because mentally ill people do not get the support they need to cope with 
normal life. Conversely, homelessness precipitates and exacerbates a wide 
range of health problems, including mental illness. Homelessness also makes 
treatment and management of mental illness more difficult, even if appropriate 
services are available. 

The policy of deinstitutionalisation, which began in the 1960s in some States 
and later in others, is widely believed to be the major cause of homelessness 
among the mentally ill. But the homeless mentally ill did not become visible in 
large numbers until years after the peak of that policy. Clearly, therefore, 
deinstitutionalisation was not the only cause. The loss of low-cost rental 
housing since the 1970s is another important factor:74 

It is our view that people with schizophrenia who once could afford a room or boarding 
house can no longer do so and must seek shelter in the refuges. In fact, it was only after
 1981 when low cost accommodation became scarce in Sydney that 20 out of the 22 schizophrenic
 men [in the study] began to use the refuge on a regular basis.75 

Human Rights and Equal Opportunity Commission Page 555 

In an era of affordable accommodation, our psychiatric hospitals were emptied 
with little or no thought apparently given to where the former patients would 
live. (If thought was given, then clearly grossly inadequate resources were 
allocated to translate policy into reality.) In the 1990s analogous and equally 
irresponsible practices continue. Mentally ill people are admitted to hospital in
 an acute state, then discharged without health authorities having any idea what becomes
 of them. 

Apart from the direct effects of deinstitutionalisation, evidence to the Inquiry 
clearly established that homelessness is a frequent consequence of mental 
illness. Expert witnesses referred to a 'social drift' of people with long-term 
disabilities down the socioeconomic scale, through unemployment and into 
homelessness.76 It is especially true of people with schizophrenia and those 
with drug and alcohol abuse problems (which frequently accompany mental 
illness among the homeless)77, who end up 'disadvantaged and destitute'.78 

The vulnerability of someone with a current disorder is considerable... As social and
 economic supports fall away, it becomes increasingly likely for a person to become homeless.79 

Does Homelessness Cause Mental Illness? 

A person who is homeless is susceptible to stress and hardship that most of us cannot
 even begin to imagine. Such pressures are likely to bring about mental illness.80 

For most homeless people with a mental disorder, the disorder occurs before 
homelessness.81 However, on the evidence presented to the Inquiry, it is clear 
that homelessness may contribute to mental disorders, to associated problems 
such as substance abuse, and to impeding appropriate treatment or responses. 
As one expert witness explained: 

It's certainly true that people become mentally disturbed [and] very depressed by their 
experience in this environment... You often see people talking to themselves or... sitting 
together talking and having what I call parallel conversations — so in other words nobody 
is listening. And I think that sense of isolation and lack of feedback does lead to mental 
disturbance, and certainly would contribute to pre-existing mental illness and...to drug-taking
 and alcohol abuse and, I think, would cause depression.82 

This view is strongly supported by recent overseas research.83 

Homelessness and poverty can also contribute to a perception of mental illness: 

If that person was well off, had supports, they may be labelled eccentric. If they are poor,
 without accommodation, homeless, they are labelled mad. And I think that is a big distinction 
we need to be aware of.84 

Page 556 Mental Illness Inquiry 

Particularly Vulnerable Groups 

The combination of homelessness and mental illness is a daunting burden. But 
among the homeless mentally ill there are groups with special needs who are 
even further disadvantaged.85 

One group frequently identified by witnesses was homeless women. 

Very little information is available on homeless women: most surveys of the 
homeless focus on single men.86 Few services exist for homeless women, or 
for homeless families.87 Boarding houses, being mixed accommodation, are 
often inappropriate for women who have been abused by men.88 For women 
with a mental illness, sometimes compounded by drug or alcohol dependency, 
there is almost nowhere to go — especially if they have children. In Adelaide, 
for example, Catherine House is the only shelter prepared to take women with 
psychiatric or substance abuse problems.89 But even that shelter cannot take 
children — so in Adelaide, as in a number of other cities, women with children 
who are homeless and mentally ill have no accommodation options at all. 

Children and young people with mental illness are also at particular risk if they become homeless.
 The deprivation, violence and exploitation associated with 
youth homelessness has been described in the Commission's report Our 
Homeless Children; mental illness makes a homeless young person even more 
susceptible to those risks.90 

People who live in rural communities are another group with special needs. 
Homelessness and mental illness are by no means confined to the cities: 

Almost all the new services which have been established to accommodate and assist homeless 
people in the country areas report that they have many clients who have been discharged from 
hospitals or who are mentally ill." 

Smaller population centres also lack the cheap accommodation which transient 
people can often find in cities. In Port Lincoln the Inquiry was told: 

There are no hostels, no boarding houses, there is no form of alternative accommodation 
in Port Lincoln, and I have known of young people sleeping on the oval because they suffer 
from schizophrenia and nobody wants to have them in their home.92 

Mental health services generally are woefully lacking in country areas, and any 
support for the homeless mentally ill is spread very thin indeed.93 

Human Rights and Equal Opportunity Commission Page 557 

Dual and multiple disabilities are common among the homeless.94 For 
example, many homeless people have a mental illness and an intellectual 
disability, or a mental illness and a substance abuse problem: 

We observe that these people in fact abuse a variety of substances to cope with their illnesses 
and their subsequent rejection by existing [mental health care] systems. [They often use] 
prescription pills and alcohol rather than hard illicit drugs.95 

People with dual disabilities have particular difficulty coping with daily life: 
they are possibly the most disadvantaged of all the mentally ill. Paradoxically 
— and inexcusably — they are often excluded from support services because 
they do not comply with formal guidelines designed for only one disability. For 
example: The staff of one inner urban non-medical detox [centre] cannot supply people with 
medication for mental illness because it is a non-medical detox! This leaves the person unfortunate
enough to be afflicted with a dual disability — alcohol dependence and mental illness — without 
access to treatment services. Similarly, many psychiatric services refuse to treat the mentally 
ill who have drug or alcohol related disorders.96 

The resistance from government psychiatric services is based on the assessment 
of problem behaviour as being 'drug induced' and therefore not appropriate to 
a mental health facility.97 The evidence from staff in one major Victorian 
agency typified reactions to this policy expressed by community groups: 

We recognise that the distinction between psychiatric illness and substance abuse can be murky, 
however... It is our belief that the [Victorian] Office of Psychiatric Services has to accept the 
reality of this client group, that they are likely to abuse substances (as 
opposed to being addicted to them), and that this is another symptom of the individual not coping,
 rather than the cause.98 

This process of exclusion 'borders on the systemic for homeless people with 
multiple disabilities'.99 

Conditions in Shelters and Refuges 

Many who would have been in previous times housed in hospitals...are now housed in accommodation