House of Commons - Scottish Affairs

Select Committee on Scottish Affairs Minutes of Evidence

Memorandum Submitted by Alzheimer Scotland-Action on Dementia (17 April 1998)

Early-onset dementia is the term used to describe those under the age of 65 years who have been diagnosed with some form of dementia. The main types are Alzheimer's disease and vascular dementia. Rare causes include tumour, normal pressure hydrocephalus, frontal dementias, CJD, HIV. Very small numbers of people have symptoms that are treatable. Correct diagnosis is vital. In Scotland there are approximately 2,500 people with early-onset dementia. Because it is a relatively unusual condition there are very few age-appropriate and sensitive services to meet their needs. Specialist services appear to be available to only 5 per cent to 10 per cent of this group and their families. It is however, widely recognised that the needs of younger people with dementia are often different to the needs of older people with the illness.

2. WHY EARLY-ONSET DEMENTIA IS DIFFERENT FROM LATE-ONSET

The needs of people in their 40s and 50s are different from those in their late 70s and 80s. Dementia care becomes care not only for the individual and their primary carer but care which has regard for the needs of the whole family, particularly where there are dependent children.

— Age specific differences—employment issues are prominent, possibly affecting income and pension rights; there may be dependent children at school or in higher education, mortgage to pay etc. These responsibilities will normally be finished for an older person with dementia.

— The impact of psychological stresses on the family will be different, especially where there are young children or adolescents. The pressures on the partner without dementia, who becomes the principal carer, are particularly great. There is higher incidence of anxiety, depression and behavioural problems in younger people with dementia than older people.

— Contrary to what has been assumed in the past, the progression of the disease is not more rapid for younger people. Survival rate may be up to 15-20 years.

3. THE NEEDS OF YOUNGER PEOPLE WITH DEMENTIA

3.1 Importance of improving diagnostic techniques available to all

Timely and accurate diagnosis is essential and can be achieved with improved diagnostic techniques. Individuals have a right to information about their diagnosis and to have an explanation of their symptoms. Research evidence shows that about 10 per cent of cases are misdiagnosed. Some forms of dementia are reversible if diagnosed early enough (Korsakoff's) and stroke related dementia may be helped by an adjustment to lifestyle. Younger people with dementia probably have most to gain in terms of "health gain" from early diagnosis. However diagnostic instruments are not widely available and only those in major centres have access to a thorough diagnosis which can then:

— access drug treatment such as donepezil;

— facilitate financial and legal planning;

— help family members to adjust to changing roles.

3.2 Supported diagnosis

Younger people with dementia and their carers need supported diagnosis which requires the provision of ongoing help for the person with dementia and their family to come to terms with the diagnosis and to access information; assessment and appropriate rehabilitative and services which offer counselling, peer support and benefits advice. Because of the very long term and progressive nature of the illness the appointment of a key worker is essential to get to know the family and develop a relationship of trust so that individualised services can be provided, and to enable continuity of care.

3.3 Services needed

People with dementia and their carers want flexible, age-sensitive services. These should include:

— information on the illness and services available;

— employment, pensions, benefits and legal advice;

— counselling for the person with dementia and their carer;

— carer education;

— peer support for the person with dementia and family members;

— an ongoing programme of rehabilitative activities;

— specialist home support;

— holidays;

— specialist day care and short-term care;

— specialist long-term care.

4. PROBLEMS WITH EXISTING SERVICES

4.1 Lack of specialist services

Age specific home support, respite care and long-stay care are essential for younger people with dementia. There is almost a complete absence of such services in Scotland. Short-term respite and long term care in acute mental health units or facilities for older people are nearly always inappropriate.

Families in rural areas experience particular problems in accessing appropriate family support.

Traditional day care in centres for elderly people is inappropriate for reasons other than that they are age inappropriate: they are generally too large to provide individualised care; too noisy and busy, which increases confusion and makes challenging behaviour hard to address; and the environment too complex which creates problems for orientation. It is also unlikely that staff trained will be trained in dementia care.

5. PROFESSIONAL ISSUES

The following have been identified as issues for professionals:

— lack of knowledge and skills;

— need for inter-disciplinary working, particularly community dementia teams;

— need to improve techniques for giving information to people suffering memory loss and who are suffering high stress levels;

— joint commissioning of services for this group is essential.

6. EXAMPLES OF GOOD PRACTICE

The Dementia Initiative allows me to work and have a life—we are very lucky with the lady we have

Carer, Stirling.

I felt going to the meeting helped. I learned from Jim.

Peer group member with diagnosis of dementia

Each of the following services aims to provide a "person-centred" approach to the care of the person with dementia, however there is a different emphasis within each, some concentrating more on one to one counselling, others providing informal day care and peer and carer support. They all have a philosophy of listening to the views of the person with dementia about the sort of help and support they want for themselves.

— Alzheimer Scotland—Action of Dementia Early—onset project, Edinburgh, provides one to one support to individuals and their families in their own homes, according to need for several hours each week.

— Alzheimer Scotland—Action on Dementia Younger Person's project, Glasgow provides, inter alia, a counselling service.

— Dementia Care Initiative—Central Scotland (Stirling, Falkirk and Clackmannon local authorities) provides:

— self-support group, support worker, advice and information; carer support—group for partners;

— group for sons and daughters;

— art therapy courses for carers;

— support meetings (for both partners, together);

— holidays (couples together);

— town break drop in;

— self support.