Impact review 2011/12

Tim Wilkins, an Alzheimer's Society Service User Involvement Officer, works with people affected by dementia in West Sussex to shape future services. His role is funded by West Sussex Primary Care Trust.

Why is it important to involve people with dementia and carers in developing and improving services?

'I want to make sure we're doing everything we can to enable people with dementia to do the things that they want to do - and that they're getting the support they need. I look at different ways of engaging with people affected by dementia. My aim is to make them aware that Alzheimer's Society and other organisations are here for them.

'I've met some wonderful people living with dementia, their carers and families, every one of them doing their best to live their lives, as well as they can, often without many choices. I've listened to their views, tried to understand their situation, and worked with them to bring about changes to local services.

'We try to give people ownership of the services they use. For example, in the Dementia Cafés, we find out that activities people with dementia would like to do. These are their services after all. Looking forward, I believe having services that respond to people's individual needs and offering them choice is vital.' 

How do you make sure you reach people with dementia from all different communities?

'It's an essential part of my job. I have found it so important in all communities to gain trust. So I've been along to groups, activities and organisations, speaking with many members of the community and community leaders to gain insights and respect. I make it clear that I'm not there to tick a box but to consult with them about long-term plans. I'm currently working on a leaflet about dementia for the gypsy and traveller communities, and have an ongoing working relationship with the Sussex Lesbian, Gay, Bisexual and Transgender telephone helpline.'

What improvements do you want to see in the future for people with dementia?

'I want to see communities becoming dementia friendly, where people living with dementia have more control over their lives and the choice to do the things they want to do. People with dementia have a voice, a voice that must be heard.

Awareness of dementia continues to grow and this is something we must take advantage of. We need everyone to understand that people with dementia are just like you and me - and that we could end up with dementia. It's only right that we improve things for people with dementia, their families and carers, now and in the future.'

During the year

• We began a significant programme of work to make sure that people affected by dementia are actively and meaningfully involved in influencing what we do, wider awareness-raising, and policy development. This includes training staff, speaking to the media, informing research and planning new services.
• We continued to explore new and better ways of engaging with people affected by dementia in black and minority ethnic communities. For example, our extensive and innovative work in East London has resulted in a significant increase in the number of families of Bangladeshi and Somali origin whom we support.
• We rolled out our Carers' Information and Support Programme in 17 places. This helps carers of those with a recent diagnosis to develop the skills and confidence they need to manage their caring role and plan for the future. We also piloted three new sessions in five places on issues that arise for carers as dementia  progresses, and this part of the programme launched in the spring.
• We have been responding to the introduction of Personal Budgets, where people are allocated a budget to pay for their own care, and the growing number of people paying for their own services, by making sure we are ready to deliver our services in this way. Personal Budgets are already in place in some areas of England.