Dementia advisers: a cornerstone of the national strategy

Natalie Valios reports on the progress of one of the national dementia strategy’s cornerstone policies – ongoing support for people with the condition from a network of dementia advisers

It is such a simple idea that it’s a wonder it has taken so long to come about. During consultations for the draft national dementia strategy, people with the condition made it clear that they wanted to be able to turn to someone for help and advice at any stage of their illness – support that is usually absent after health and social services discharge the patient.

So convincing was their argument that the government put continuing support at the heart of last year’s strategy and funded two types of demonstrator site in England until March 2011: 22 are testing the effectiveness of dementia advisers, while 18 are running peer support sites.

A dementia adviser is a single identifiable point of contact to provide people who have the illness and their families with easy access to information and support. The peer support sites are looking at different ways to provide local practical and emotional support, such as through dementia cafes and social networking sites.

Of the 22 dementia adviser sites, the Alzheimer’s Society is working in partnership with local authorities on 16. Dementia advisers are coming into post now, although the Alzheimer’s Society is ahead of the game: it established three pathfinder sites last year in Sheffield (see case study), Coventry and Greenwich.

Dementia advisers can be based in GP surgeries, hospitals or community mental health teams. They focus initially on the patient rather than the family or carer but as the condition deteriorates the relationship will change. Mary Garvey, the Alzheimer’s Society’s director of service development, says: “It will involve a change in dynamics. Information needs will change from questions like ‘is it safe for me to drive?’ to the carer asking about care homes or respite care.”

Any national rollout of demonstrator sites will depend on the findings of a national assessment team appointed by the Department of Health.

But there is concern that decisions for the next commissioning round in 2011-12 will be made at the end of this year before the evaluation is complete. “Many commissioners are keen to see evidence before they fund dementia advisers,” says Garvey. “But because people said they wanted them we hope that commissioners will continue to fund it after the first year.”

Case study: DERRICK NORMAN dementia patient

‘You deteriorate faster if you are isolated’

Derrick Norman has been there before. Diagnosed with dementia in April 2009, the 80-year-old widower has lived alone since his wife died of Alzheimer’s several years ago.

He is now one of 50 clients using the Alzheimer’s Society’s dementia adviser service in Sheffield, having self-referred to the charity after recognising the importance of the support the charity gave him when he cared for his wife.

“I think you deteriorate faster if you are isolated,” says Norman. “It’s important to have one named person to contact and I’ve got to know my dementia adviser, Nicola [Jacobson], and feel I can talk to her. She has been there for me. She has put me in touch with a monthly support group for people with dementia and a weekly social group for older people in my area.”

The dementia advisers – Jacobson job-shares with Ros Witherspoon – sit in the information, advice and support service at the Alzheimer’s Society’s Sheffield office, which refers clients to them. Before the pair’s arrival, the society’s service was already well-established, receiving about 40 referrals a month from memory clinics, neurology departments, community mental health teams, hospitals and self-referrals.

Jacobson has to answer some difficult questions, often about the client’s chance of recovery or how long they can expect to live.

“I try to be supportive,” she says. “When someone asks whether they will get better I will normally say ‘I wish I could say that you will but that’s not the case’ and then I try to focus on the good things that are happening in their life.”

Currently, all clients, except one, live at home so Jacobson is still learning how her relationship with them will change as the dementia progresses. “I have one client in hospital who might be going into care and that will be challenging,” she says. “As people deteriorate it’s for us to be imaginative about how we communicate with them to find out what’s important to them and if there’s anything they’re concerned about.”

Giving people support pre-diagnosis is also crucial. Jacobson says: “We have one man in his sixties who is being tested at the neurology department but, because his symptoms are mild, he has to wait another year before he has more tests. I’ve met him and his wife to talk about symptoms, coping strategies and things he can access that aren’t necessarily statutory services. During the year he’s waiting for a diagnosis he can continue talking to me.”

Published in Community Care 25 March 2010 under the headline ‘Welcome Advice’

Related links

The dementia strategy in action in Croydon

Judith’s story

Dementia care homes, plus useful links

Dementia 2010 by the Alzheimer’s Research Trust.

Dementia UK by Alzheimer’s Society, King’s College and London School of Economics

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