Living with dementia magazine March 2011

The Society's Dementia Adviser service is now supporting more than 8,000 people with dementia by offering vital information and advice whenever it is needed, by Luke Bishop.

The days, weeks, and months after receiving a diagnosis of dementia is for many a time full of anxiety and worry about the future. But the impact of the diagnosis can be much worse if the person with dementia feels alone afterwards, without sufficient support, advice and information to plan ahead for their future.

Such gaps were identified in the National Dementia Strategy for England in 2009. In response, for the last two years Alzheimer's Society has been running its Dementia Adviser service.

Dementia Advisers are responsible for giving personalised support to people with dementia throughout the illness, from the point of diagnosis. They provide a much-needed source of information and advice and are a main point of contact for the people with dementia they support. They ease their clients' access to care and support by informing them about services, groups and activities that meet their needs and interests. If a client is in need of more intensive emotional and practical support or group support, dementia advisers will refer them on to a dementia support worker or relevant group.

People with dementia have played a key role in developing the service. Colin Capper, the service's development manager, says,

'The Dementia Adviser service is built around the priorities of people with dementia. It looks after their needs and is designed in consultation with people with dementia to help them make day-to-day decisions and plan for the future.'

For example, people with dementia recommended that Dementia Advisers use postcards to introduce particular topics to be discussed when they get together. The cards provide bite-sized information about relevant topics such as diagnosis, driving, money and benefits, health, and legal issues.

A valued service

In 2009, there were five Dementia Advisers in just three locations. Now, the Society has 78 advisers in 31 locations, supporting 8,170 clients.

But the success of the service is truly measured in the impact it has had on the lives of people such as Valerie Butler, 71, from Coventry. Seeing Dementia Adviser Tina Savery regularly since her diagnosis two years ago has helped Valerie come to terms with what she initially considered to be an embarrassing and frightening disease. Tina's visits have helped Valerie overcome her initial fears and appreciate that there's no shame in living with dementia.

Valerie, who has Alzheimer's disease, says,

'When you are diagnosed, it is frightening and you just need some support and someone who can answer questions. I think seeing Tina has helped me because at the beginning I felt ashamed of what I have and I didn't want anyone to know. But when you talk to people about Alzheimer's disease, you realise it is so widespread. With help, you can bypass those feelings and hopefully go forward.'

Information provision has also been a big source of help for Valerie. Tina has provided her with information on claiming the benefits she is entitled to as well as introducing her to a group that helps people coping with memory problems.

Also benefitting from the service is Barry Reeve, 76, from Sheffield, been seeing Dementia Adviser Ros Witherspoon since being diagnosed three years ago. Like many people, Barry was referred to Ros through a Memory Clinic in Sheffield, where he attended a Coping with Memory group.

Ros says,

'When I first got involved with Barry he was losing confidence and not wanting to go out because of the diagnosis. It was making him feel that he didn't want to meet people, but that has completely reversed now.'

Previously, Barry had been keen on the arts so Ros helped him regain his confidence by signposting him towards art and creative classes, as well as a Singing for the Brain group.

Barry says,

'It's the strange thing about this Alzheimer's that I used to be shy and quiet but now I have lost some of my inhibitions. I talk in the support group and I will get up and sing on my own at the Café. It has been one of the good things about Alzheimer's. I do enjoy myself more.

'The help I've had has been excellent in finding the things that I wanted to do. Ros finds out about them and checks them out, so I know that it will be alright for me. Ros treats me like an individual; she has got to know me and suggests things that she knows I will be interested in.'

If you are interested in finding out more about the Dementia Adviser service you can contact your local area office or ring the Alzheimer's Society National Dementia Helpline on 0845 3000 336.

Note: Alzheimer's Society would like to pay tribute to Claire Bignall, one of the first Dementia Advisers in Greenwich, who sadly died in January. Claire's vast knowledge, great sense of humour and commitment to the highest quality of service for people with dementia and their families will be remembered by many of us.