Living with dementia magazine June 2012

People who have both dementia and a learning disability such as Down's syndrome have additional needs. Luke Bishop talks to a carer about her struggle to find appropriate care for her daughter.

Alzheimer's disease has a much higher incidence among people with Down's syndrome and tends to develop at a much earlier age. One in three people with Down's syndrome between the ages of 50 and 59 have dementia.

Advances in medical science and care have increased the life expectancy of people with Down's syndrome, and so the number of people with the condition who also have dementia is rising.

However, in the experience of one carer, the complex needs of this growing group aren't necessarily met by services that specialise in either dementia or learning disabilities.

Quick diagnosis

Angela O'Hare's daughter Diane was diagnosed with Alzheimer's disease 10 years ago when she was 36. Angela had noticed behavioural changes to her previously happy, loving and capable daughter, who was working and living independently.

One new aspect of her daughter's behaviour was aggression. Angela says,

'She was being very dictatorial about what time I came in - it was just a general change in behaviour which was totally opposite to the lovely, pleasant, happy girl that we had before.'

Thankfully the diagnostic process for Diane was relatively smooth since her psychiatrist was aware of the relationship between Down's syndrome and dementia. This early diagnosis meant she was prescribed Aricept (donepezil) to help with the symptoms and took part in regular psychiatric testing from then on.

Encouragement

However, the ease of diagnosis contrasts with the difficulties Angela has since encountered in getting good care for Diane. After diagnosis Diane eventually moved back with Angela, but she only was able to get four hours of help a week from her local authority. Angela successfully fought to increase this to 12-and-a-half hours, but increasingly struggled to cope with caring.

The decision was made to find a place where Diane could be cared for and, after a short search, she moved into a residential home for people with learning disabilities. Angela says that although the home caters for people with learning disabilities, staff members don't have knowledge or training about dementia and therefore struggle to understand Diane's increasingly complex care needs.

Angela adds,

'Diane requires more than the normal standard of care for people with learning disabilities. She needs someone assigned to her, for example, so she can go out on a trip - otherwise she will get lost mentally.

'She needs somebody who will make sure her life skills are kept up as, at present, Diane has got to a stage where she will just sit there and watch what is going on. If she's asked to do something she will say no and so she needs to be encouraged.'

Changing needs

A specialist dementia care unit had been considered for Diane but Angela found it inappropriate because the other residents were much older and she felt the staff lacked awareness of learning disabilities. With the help of a social worker she continues to look for more appropriate care for Diane. However, she feels that people with Down's syndrome and dementia lack specialised services and staff who are fully aware of both sets of needs.

'People who are looking after people with learning disabilities need to be aware that dementia is increasing and the number of people with Down's syndrome and dementia that they will come across will be a lot greater. They need to have access to training by people who know about both conditions.

'They have got to be aware of Diane's changing needs and have got to constantly reassess them. It is easy to place somebody with a learning disability in a home and have a care package that takes into account what they require - but with Diane it is constantly changing.'

To find out more about Down's syndrome and dementia you can download our Learning disabilities and dementia factsheet (430) from alzheimers.org.uk/factsheets or call 01628 529240 to request a copy.

The British Institute of Learning Disabilities (BILD) has a number of publications about Down's syndrome and dementia aimed at friends, family and carers as well as health and social care professionals - see www.bild.org.uk or call 01562 723010.

For further emotional or practical advice about Down's syndrome and dementia, call the National Dementia Helpline on 0845 3000 336 in England and Wales or 028 9066 4100 in Northern Ireland.

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