DOWN'S SYNDROME AND
ALZHEIMER'S DISEASE
Services
The needs of people with Down's syndrome and Alzheimer's disease do not
necessarily fit the services available. This is because many people with Down's
syndrome develop the symptoms of Alzheimer's disease at an earlier age than the
general population. Although it can be argued that people with Down's syndrome
should receive the same services as other people with early onset dementia, the
reality is that in many areas such services are patchy or non-existent.
"Normalisation", in this case, may mean no service at all or result
in the individual with Down's syndrome being passed around services like a
"hot potato". (1)
An additional problem one often meets when trying to get services for people
with Down's syndrome and Alzheimer's disease is finding a service that feels it
can cope with the two disabilities. Services specialised in learning disability
often feel they are not equipped to cope with the Alzheimer's disease and,
conversely, those specialised in dementia and ageing feel ill-equipped to deal
with the learning disability. Some of this is merely a problem of labels since
many of the basic needs and methods of help are similar. However, carers may
find that some services are reluctant to step beyond their specialism.
Obtaining services
Before setting about obtaining services, carers will need to be clear about
what is needed. Many family carers are not very good at identifying needs, and
often just carry on until someone else sees the needs or until there is a
crisis. In thinking about what is best, carers often find it helpful to
organise themselves by firstly asking: "What are the needs of the
individual?" and "What are the needs of the carers?". Then they
list the resources required to meet these needs (e.g. financial, transport, day
care, home care, advice on behaviour, etc.). Lastly, they contact the
appropriate services with this "shopping list".
For most social care services (home care, day care, and residential care)
the important point of contact is usually the local authority Social Services
Department. Under the NHS and Community Care Act (1990), which took effect from
April 1993, Social Services have a duty to assess the individual's needs and
develop a care plan after consulting with other appropriate services (e.g.
health and housing). They must also take notice of the wishes of the individual
client and the carers. The care plan should spell out how an individual's needs
will be met and which services should be sought and provided. It must also
state the name of a professional who will be the keyworker for the client and
provide the help needed to put the plan into action.
The range of services available to individuals and their carers varies from
area to area. Services are also organised differently in different parts of the
country. In some regions, Social Services, Health, and the independent sector
work in close partnership, sometimes within a joint agreement or consortium. In
other areas, the main services have very separate identities. However, recent
legislation requires local authority Social Services departments to work more
closely with health services and private and voluntary organisations, so that
community care services are more easily obtained by those who need them.
Many carers will also find that their GP can put them in touch with
services. Advice can usually be obtained from the individual's day centre or
from a Citizens Advice Bureau. The local community mental handicap or learning
disability team is often in a good position to advise and give information to
carers. Carers should also use these sources to ask about services from the
voluntary or private sector. The Down's Syndrome Association can help with such
enquiries.
Living at home
One of the major considerations is whether the individuals can be helped to
stay in their present home. Unnecessary change is clearly unhelpful to someone
struggling to keep in touch with reality.
Whilst the ideal may be to enable the individual to stay put, the situation
may dictate otherwise. What happens depends on a number of factors relating to
the changing needs of the individual and the ability of carers to meet them.
The level of support services coming into the home, and the level of respite
care services provided outside it, may be crucial in determining whether the
affected person with Down's syndrome is able to continue living at home.
Domiciliary support services are provided by Social Services, the Health
Service, and the private and voluntary sector. They are obtained by approaching
the individual service concerned or by asking the local authority Social
Services department to include the need for domiciliary services in their
overall assessment.
Social services
The local authority Social Services department can provide a variety of
services.
Home Care assistants and care attendants provide a range of services from
care of the individual (non-nursing) to care of the home. In some areas sitter
services, which allow the carer to take time off, are available. Other help may
be available for shopping and checking-up calls. In some areas, home care
services may have been privatised, but they can still be obtained through
Social Services. In many areas, charges are made for home care services based
on an assessment of the ability to pay.
Occupational therapy units can give advice on aids and adaptations and help
to obtain them (including financial grants from local housing authorities),
plus advice on maintaining daily living activities.
Short stays of respite care may be arranged at a local residential home.
Social workers can give counselling for carers, support, help to obtain
services, and advice on benefits.
Health Authorities/NHS Trusts
Use a direct approach to contact each of these service providers (or an
approach via the person's GP):
- district nursing provides nursing care at home and nursing advice to carers
- community nursing gives advice to carers on management, care problems, and
services; there are two types of community nurse, one specialising in learning
disability, and one in psychiatry or psycho-geriatric care
- other professional support; a range of specialist advice and support may be
available from hospital-based or community occupational therapists,
psychologists, psychiatrists, speech and language therapists, physiotherapists,
dietitians and continence advisers
- community teams (community mental handicap or learning disability teams; a
range of professionals specialising in learning disability and co-ordinated by
Health and/or Social Services can offer many services and help to understand
other facilities
Voluntary organisations
A variety of schemes may be available to complement the statutory services
in caring for someone at home (e.g. Crossroads, Good Neighbours, local branches
of Alzheimer's Disease Society).
Information on voluntary services can be obtained from the local council,
library, Citizen's Advice Bureau, or Social Services Department.
Benefits
In addition to support services to assist in maintaining people in their
present home, individuals and their carers may be entitled to increased levels
of financial benefits from the Department of Social Security, because of the
increased level of care needed. It is important that carers seek information
and advice regarding the individual's benefit entitlement, as this may be
crucial in enabling him/her to stay at home.
Day services
An important source of help in maintaining people in their present home is
day care. The options for day care services may seem quite wide but in reality
there could be little or no choice. Depending on the area, the possible
alternatives may be:
- a Social Education Centre or Adult Training Centre, with or without special
groups for older people with learning difficulties (usually run by the local
authority Social Services department)
- a Special Care Unit for people with profound and multiple learning
disabilities (run by Social Services, a voluntary organisation, or a private
owner)
- a day centre for people with Alzheimer's disease or elderly mentally infirm
people (run by Social Services, private or voluntary)
- a day hospital for people with Alzheimer's disease and/or elderly mentally
infirm people (run by local health authority/NHS trust)
Day services for those living at home can be obtained by approaching the
local authority Social Services department who will refer you on, if
appropriate, to other agencies providing day care.
If the individual lives in a residential home, day activities may be
provided there, although in some cases these may be minimal. In some areas,
people living in private sector residential care are not eligible for outside
day care services, because it is deemed that the residential home is
responsible for providing day activities.
Residential services
Families may be under such stress that it is kinder to all concerned,
including the individual, to seek the most suitable residential care option.
Sometimes the changed needs of the person affected by Alzheimer's disease make
it impossible to cope at home, even with high levels of domiciliary support.
If the person is already living in a residential unit, additional resources
such as increased staffing and home adaptations may be more easily found to
meet an increasing level of need. Certainly the NHS and Community Care Act
(1990) endorsed the notion of resources moving to the person, rather than the
individual having to move to fit in with existing services.
In the spirit of the Act, we know of local authorities which have increased
their level of financial sponsorship to residential units so that they can
increase their level of care services to people with Down's syndrome who become
affected by Alzheimer's disease. We also know of other residential units which
have been so deeply committed to their individual that they have continued to
provide a home throughout the course of the condition without being able to
muster additional resources.
Nevertheless, some residential units will simply not be able to cope and,
again, it may be kinder for the individual to move to a setting which can
better meet his or her needs.
If a move from the family home, or from the individual's present residential
home, is unavoidable, the question will be: "where to?" The options
are likely to be one or more of the following:
- a residential unit for people with learning difficulties which provides a
higher level of care (run by social services, a voluntary organisation or a
private owner)
- a health service residential unit for profoundly and multiply disabled
people provided either in ordinary housing or in a hospital base (run by the
local health authority or NHS trust)
- a rest or nursing home registered for elderly people and therefore only
able to take those people over the age of 60 or 65 (run by social services,
health or the private sector)
- a rest or nursing home registered for elderly people, people with early
onset of dementia and/or people with learning disabilities (run by social
services, health or the private sector)
Again the options may seem wide yet, in reality, there may be very little
choice. This is because of the problem in finding residential homes which cater
for the dual disabilities of Down's syndrome and Aizheimer's disease.
Restrictions imposed by the way a particular home has been registered may be a
further obstacle, although the local Inspection and Registration Unit (run by
Social Services) may be able to help. A further problem may simply be a lack of
vacancies. Nevertheless, we know many residential homes catering for the needs
of people with Alzheimer's disease which welcome people with Down's syndrome
and have found caring for them particularly rewarding.
Admission to residential care, where funding is required, is now dependent
on a formal assessment led by the local authority Social Services Department.
From April 1993, payment of residential care fees, other than health service
provision, has been transferred from the Department of Social Security to local
authority Social Services departments. Therefore, unless the individual has
sufficient private means, the local Social Services department needs to agree
that residential care is needed, and that the choice of home and level of fees
is appropriate.
Conclusion
Residential care needs to be sought from the local authority Social Services
Department who will assess the need for it and give help in obtaining it. This
applies regardless of whether the home is run by Social Services, the voluntary
or private sector. All local authorities now have complaint procedures, which a
carer or advocate can initiate, in the event of disagreement with a Social
Services department about plans made for an individual. A pamphlet explaining
how to make a complaint should be available from the local authority, and
advice can be sought from a Citizens Advice Bureau.
For residential provision run by Health Services, applications need to be
made to the local Health Authority/NHS Trust via the individual's GP or other
health professional. Information and advice can be sought from the local
community mental handicap or learning disability team or through the local
authority Social Services department.
Summary
If the behaviour of the person with Down's syndrome whom you care for has
noticeably changed:
- seek out any recent major events or changes in his/her lifestyle
- monitor and keep note of the changes (what, when and where)
- ask for professional advice; prepare your questions in advance, write down
the facts/observations you have made, and make a needs list
- look after your own needs as well
- try to maintain routines for as long as possible
- seek out possible support services
References
1. M Marshal (1992) Down's syndrome and
dementia. In A Double Challenge paper 19.27, CCETSW: London.
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