PEOPLE
WITH INTELLECTUAL DISABILITIES AND THEIR ELDERLY CARERS
Jane Hubert and Sheila
Hollins (UK)
The majority of people with intellectual disabilities in the
UK live at home with their families, usually with their parents
(Mental Health Foundation, 1996), or - more commonly in later
life - with one parent, usually their mother. Nowadays, people
with intellectual disabilities live much longer than they did
in the past, with the result that there is also an expanding population
of elderly parents who are continuing to care for a son or daughter
well into old age. Also, the ageing process may start much earlier
for people with intellectual disabilities than for others in the
general population.
The increased population of older people in the community consists
of two distinct groups: those who have been resettled in group
homes or specialist units, after living for many years in an institution,
and those who have lived in the community all their lives, the
majority with their families, but also a smaller proportion (increasing
as adults outlive their parents) living independently or in 'group
homes'.
Older people with intellectual disabilities
and their ageing family carers
When people with intellectual disabilities grows older, many
of their needs will be the same as for any elderly person living
in the community, but professionals who work for generic services
for the elderly may not consider that they have the specialised
knowledge and experience to relate to people with intellectual
disabilities. At the same time, professionals from specialist
intellectual disability services who have been able to meet their
needs in earlier years may not always feel confident when their
clients become elderly, and have age-related health and social
support needs. Cooperation between the two services is vital,
to ensure that no one slips through the net. In households where
there is also an elderly caring parent, also needing some care,
this cooperation is even more essential. Sources of help and support
need to be in place so that they can act swiftly when a crisis
arises, and to provide an appropriate care package when care in
the family begins to break down.
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Life expectancy of people with intellectual
disabilities is increasing
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More people with
intellectual disabilities will outlive their parents
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The needs of
an older person with intellectual disabilities and an elderly
parent may conflict
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Co-operation
between specialist intellectual disability and generic elderly
services is required
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Hidden population
Although most households in which there is an ageing carer and
son or daughter with intellectual disabilities will be known to
health and/or social services, Horne (1989) stressed that the
epidemiological data and empirical evidence both clearly indicate
the existence of a 'hidden' population. Often, these families
only come to the attention of the services when a crisis occurs,
for example, when the carer or adult person with intellectual
disabilities becomes ill, or physically incapacitated, or either
are suffering from dementia. There is evidence that some 25% of
people with intellectual disabilities do not become known to statutory
agencies until later in life (Department of Health, 2001).
Some parents originally concealed their child's disabilities in
order to avoid institutionalisation. Oswin (1994) suggests that
one of the main reasons why parents kept their children at home
in the past was 'the threat of having to put away their children
into big long-stay hospitals where they would be neglected' (Oswin
1994: 18). Parents may still be unaware that leaving home and
going into residential care does not entail entering a large 'mental
handicap' institution.
Some elderly carers may be reluctant to ask for help for other
reasons, including distressing experiences in the past, such as
having an uphill struggle to get help, or having requests for
help rejected. Some parents also believe that asking for help
is an admission of failure on their part (Walker and Walker, 1998).
They may be unwilling to call on professionals for help in case
this is interpreted as meaning that they are unable to cope, and
that their son or daughter might then be taken away from them.
Professionals may sometimes assume that people from black and
ethnic minority communities are close-knit and supportive. Yet
elderly people within them, especially those with intellectual
disabilities or caring for someone with intellectual disabilities,
may well live very isolated lives even within their own ethnic
and cultural 'community' (Zarb and Oliver, 1993).
Physical health
As people with intellectual disabilities grow older, as with other
elderly people, mobility and access to transport can be a real
impediment to getting to the doctor's surgery. People with intellectual
disabilities living at home with their families may not have had
to take the initiative for most of their lives, but when a carer
becomes elderly and frail, and physically restricted, their adult
children may need to access health professionals themselves, and
in fact they may not know who to turn to.
General practitioners will often have relied on family members,
who know the person with intellectual disabilities well, to alert
them to the fact that there is something wrong, although carers
themselves may also fail to recognise the signs and symptoms of
illness. As parents become elderly, they may become less observant
of changes in the health status of the person they have been caring
for.
It is vital to identify the cause of decline in later life, and
to reverse the process with the appropriate treatment wherever
possible. Many common ailments in middle and later years can be
improved if health and social work professionals are proactive
in helping people with intellectual disabilities get access to
the relevant services. One factor which may make this more difficult
is that doctors, nurses and other health professionals are sometimes
unclear about what their role should be, and are inexperienced
in professional relationships with people with intellectual disabilities;
they may consider that they do not have appropriate skills, and
become demoralised in contacts of this kind (Royal College of
General Practitioners, 1990).
Mental health
Psychiatric disorders, including depression, affective disorders,
anxiety disorders and delusional disorders, are more frequent
among elderly people with intellectual disabilities than among
the general elderly population. Dementia is also more frequent
among elderly people with intellectual disabilities, particularly
among people with Down's syndrome, and the incidence will continue
to rise as longevity increases (Cooper, 1997).
Needs of older carers
Parents who have continued to care for a child with intellectual
disabilities into the latter's late middle age will have their
own health and social support needs as they themselves become
elderly. Many carers at this stage are widowed mothers. In these
circumstances the surviving parent will have lost not only a spouse,
but also someone who helped in the day to day task of caring for
a son or daughter with intellectual disabilities (Walker and Walker,
1998). Ageing carers and their adult children will have a complex
set of individual and joint needs.
The caring parent may become physically or mentally infirm. Common
problems include decreasing mobility and all that this implies:
difficulty in getting upstairs, cleaning the house or cooking,
and inability to get out of the house, to go to the shops to buy
food, or to visit their General Practitioner.
Family and social networks tend to collapse, or at least become
inactive, as people get older, and households in which there are
elderly parents, or one surviving parent, and an ageing son or
daughter with intellectual disabilities, are likely to become
increasingly cut off from sources of informal support from family,
friends and neighbours (Maggs and Laugharne, 1996). The composition
of the household will also have changed, not only through the
possible death of a spouse, but also as other children leave home.
Informal sources of support tend to fade out just as carers themselves
are getting increasingly frail and immobile, and needing need
more and more help and support, rather than less (McGrath and
Grant, 1993).
Some of those families who not have needed much, or any, input
from the services in the past, may in later years be in need of
considerable help and support at home, and effective monitoring
by professionals may be infrequent or absent altogether. Because
a carer has managed for many years, service professionals will
assume that nothing has changed, and that the situation can go
on indefinitely. If there is no monitoring system to pick up gradual
changes in circumstances, such situations may continue to deteriorate
until there is an irreversible crisis.
It is worth noting that carers do not necessarily perceive themselves
as being 'stressed', and emphasise the rewards and satisfactions
of caring more frequently than the stresses (Grant et al, 1998).
Social isolation of elderly carers
Parents of children with severe disabilities, and/or challenging
behaviour, may become isolated from family and social networks
much earlier in their lives, because of their all-pervasive caring
role. In later years their isolation may thus be even greater.
A study of parents caring for young adults with severe intellectual
disabilities and challenging behaviour at home (Hubert, 1991)
revealed that even at this early stage very few had frequent or
close contact with kin outside the household, or with friends.
Few of the families were part of an active kin network which provided
even moral support. It appears that in circumstances such as these
kinship rights and obligations are liable to collapse under the
strain of asymmetrical and necessarily unfulfilled relationships.
Such isolation, especially of mothers, can result not only from
the fact that they are tied to the house, and because people tend
not to want to visit such a household, but also because as their
children grow up they have less and less in common with friends
and relatives who have children of the same age. The successes
and failures in the lives of parents such as these often have
no counterpart in the daily lives of others, whose children live
their own lives, have friends, go to work and get married.
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Elderly parents are often unaware of
community support now available to adults with intellectual
disabilities
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A mutually dependent relationship may
have developed according to their needs and capabilities
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Parents may not ask for help for fear
their son or daughter is taken into care
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Elderly parents are often socially
isolated
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Planning for the future
Parents who have cared for someone since they were born often
wish to continue to look after them until some unspecified time
in the future, and may refuse to contemplate letting them go into
residential care (Richardson and Ritchie, 1989).
In these circumstances households may continue to remain independent
of services in the community, in spite of possible chronic situations,
such as physical ill health, incontinence or even dementia of
the parent. If this happens, the person with intellectual disabilities
may well lose whatever degree of independence he or she may have
had in the past.
Having a son or daughter living at home may represent a welcome
continuation of family life, especially when other children leave
home, and parents may rely on them for company, particularly as
they become less able to get out of the house. They may also not
be aware of other options. In order to plan future services for
families it is important to determine whether parents have continued
to care for a son or daughter by choice, or because they do not
consider that any alternative is appropriate or acceptable. In
some cases this might not correspond to the views of the person
with intellectual disabilities, who may not have been enabled,
or allowed, to make their preferences known.
Where parents do succeed in making the break and supporting their
son or daughter's move to a new home, their continuing involvement
in care planning, and in relevant day to day matters, must be
sensitively supported. Elderly parents will be concerned that
their own intimate knowledge and understanding of their son or
daughter's needs will not be respected and taken on board. Continuity
of care and sensitive communication with families is essential
in order to ensure that the support needs of individuals leaving
home are properly understood and recorded. New carers may perceive
family members as interfering, critical and over-protective and
as a result may withhold information, thus increasing parental
concern. It is also relevant in this context that 75% of paid
carers in the UK are untrained and inexperienced, and staff turnover
is high.
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Elderly parents may be less observant
of health changes in their son or daughter
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Co-morbid medical conditions are common
but easily overlooked unless actively screened for
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Planning for the future should include
recognising inevitable separation by death, and the need
to anticipate emotional as well as practical needs
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When people with intellectual disabilities
have moved to a home of their own, sustained effort by the
new carers is needed to support continuing contact with
elderly parents.
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Bereavement
For almost everyone, the death of a parent will cause deep and
enduring grief. For people with intellectual disabilities loss
of a parent, especially a sole surviving parent, will not only
be bereavement of a parent, but also of the person who has cared
for them throughout their lives, who has protected them, encouraged
them, fought battles on their behalf, and with whom they will
have had a close, interdependent and often exclusive relationship.
The experience may be made even more difficult because people
with intellectual disabilities are often excluded from the rituals
and processes associated with dying and death; they are seldom
taken to the funeral, for example, and people tend not to tell
them too much, in case it 'upsets' them. Nevertheless, it is obvious
that a bereaved son or daughter will be well aware that life has
suddenly changed, their mother is no longer there and probably
no one talks about her. In addition, they will most probably be
moved out of the family home and into residential care. Thus at
a time of loss, confusion and fear, a number of major life changes
take place: leaving the familiar family home and moving into a
strange house, living with a relatively large number of unfamiliar
people, and being cared for by a rota of new carers.
It is not surprising, therefore, that the effects of bereavement
(and the concomitant confusion and insecurity that follow a death)
are particularly severe and prolonged. Hollins and Esterhuyzen
(1997), in a study of recently bereaved adults, showed that these
effects may be manifested in a range of behavioural symptoms and
an increase in psychopathology, including anxiety and depression.
Conclusion
Planning for the future of households in which there is a person
with intellectual disabilities living with a parent or parents
should ideally start long before the problems associated with
age and ageing become relevant. In addition, although grief is
a natural outcome of separation and loss, the further unhappiness,
fear and confusion arising from traumatic events which have not
been planned - or even talked about, either before, during or
after they occur - may be alleviated.
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This article first appeared on the site in 2002.
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