DOWN'S SYNDROME AND ALZHEIMER'S DISEASE

Real life situations

This is a review of real life situations, to see how individuals and their carers can be supported and helped by services.

Nancy

To recap Nancy's story, this 61-year-old woman with Down's syndrome is living at home with her sister, Theresa, with another sister nearby who visits and helps out. Although Nancy has good days and bad days, she is becoming progressively more dependent and her sisters have needed to call on support.

A specialist social worker visits and negotiates for services. She has found that it is a case of testing out who can provide the best service, because Nancy does not fit neatly into the services provided. Respite care at a hostel for people with learning difficulties failed because of inadequate staffing levels. Day care services were similarly short-staffed.

A day centre for people with Alzheimer's disease had to be persuaded to give Nancy a trial. She now attends one day a week and is seen as the life and soul of the place, contributing much to the people who work and attend there. How often we have heard about the open and friendly personalities of many people with Down's syndrome adding to the quality of life of others. Nancy is very popular with the staff at the day centre who maintain that she has very different needs from the other clients, although her social worker wonders whether this is just because she looks different. Respite care is available on the same site, and Nancy has stayed there once.

Her sisters are not at all convinced that Nancy should be with very elderly people for day care and occasional respite stays. They would have preferred her to stay in learning disability services.

At home, Nancy has help with dressing, bathing, and hair-washing, from the Home Care section of Social Services and a Good Neighbours Scheme three times a week. However, because of Theresa's arthritis, help with Nancy's personal care is really needed on a daily basis. In addition, Theresa would like a sitter service so that she can go shopping without having to rely on Nancy's being co-operative.

The social worker is negotiating to get increased levels of day and domiciliary services to enable Nancy to stay living at home with the committed care and support of her two sisters.

Charles

Charles is the 42-year-old man who, until recently was living with his parents following the breakdown of a new hostel placement when he was uncharacteristically aggressive. At home, he was needing more and more help with personal care, and becoming less and less co-operative. The offer of a place in a large NHS mental handicap residential unit was received with alarm by his parents, who knew it was too large and noisy for their son. A community nurse from the local community learning disability team introduced them to a nursing home specialising in care for people with Alzheimer's disease, and which had some experience of people with Down's syndrome. Reluctantly, they agreed for Charles to move there.

Since then, Charles has had a number of epileptic fits and has become less communicative and more dependent. For periods he refuses to eat or drink and the community learning disability team's speech and language therapist and a psychologist in services for the elderly have been involved to give advice to the home's staff. The community nurse has attempted reminiscence with Charles by bringing photos and talking about his past.

Ideally, his parents would like to see Charles living in a small residential unit with other older people with learning difficulties with similar needs. However, he receives good care in the nursing home and his parents maintain his quality of life by visiting every day and, when he is up to it, taking him out to familiar places.

Frank

Frank at the age of 54 was living in a residential home run by a voluntary organisation. Although he was deteriorating fast, the organisation was committed to his staying put throughout his illness in the home that had been his for 14 years.

Because climbing stairs became difficult, his bedroom was moved downstairs, although this did disorientate him. Night-times became a real problem as Frank grew more restless and needed help in getting to the toilet. The assistants used a pressure pad by his bed linked to a bell, and then listening devices, to monitor the situation.

Help was sought from outside professionals. When the diagnosis of Alzheimer's disease had been made, a psychiatrist in learning disability gave the assistant team some useful preparation in terms of information, advice, and support. At a later stage, when it was evident that Frank was deteriorating fast, another psychiatrist attempted to support them by looking at issues of bereavement and loss. Frank's GP was caring and mobilised other services. A district nurse came once a week to bath and check him, but more importantly invited the assistants to unburden themselves to her about the difficulties of looking after someone with Alzheimer's disease.

A major source of help came from the local community learning disability team which provided physiotherapy, occupational therapy, and community nursing support. One failure in service provision was the adaptation of the house's bathroom to Frank's needs. Although the need had been identified for a year, the bureaucracy involved in getting technical advice and financial assistance was inordinately time-consuming, and in fact the adaptations were never done. Another problem was night-time care which was difficult to cater for with fixed staffing levels and no domiciliary night nursing service in the area.

It became clear that Frank's deterioration was relentless. Although the physical demands of caring for Frank were stressful, it was the fear of facing his death that created the most tension for staff and residents alike. When it came, however, Frank's death was beautiful. On his last night, when it was clear that he was dying, those who indicated a wish to take it in turn to sit with him, saying goodbye in their own way. Frank's death was not terrifying but was seen as the most natural thing in the world. Those who wanted to, came and saw his body and said their last good-byes. One person prayed that Frank would still get his Christmas presents in heaven. Others brought flowers and touched him. The whole community came together in prayers, sharing tales about Frank, and celebrating his life.

Final comments

Even in the face of a deteriorating condition there are positive things that can be done. Moreover, some time in the future there will be medications which will prevent or arrest the progress of Alzheimer's disease. However, until that day arrives, we have a duty to provide the necessary care to the best of our abilities to those fellow citizens with Down's syndrome whose lives become affected by Alzheimer's disease.