Living with dementia magazine February 2011

A peer support volunteer service in London is helping carers plan ahead to improve end of life care for their loved ones, by Caroline Graty.

For many carers, the day-to-day routine of looking after a person with dementia leaves little time or energy to think about the future. However, thinking ahead about the person's treatment and care, including end of life care, can make a real difference as the illness progresses.

Facing the Future is a peer support service that is helping carers do just that. Established during 2010, the service is a pilot run by Alzheimer's Society in partnership with the Modernisation Initiative* End of Life Care Programme. The Modernisation Initiative aims to improve end of life care services in the London boroughs of Lambeth and Southwark so that more people have a 'good death'.

Dave Bell is an Alzheimer's Society outreach and support worker who co-ordinates Facing the Future, which is open to carers in Lambeth and Southwark. Dave says,

'We know from people's experiences that end of life care for a person with dementia can be far from ideal. For example, they might be rushed from their care home into hospital, making it more difficult for the carer to visit. Situations like this can be avoided if the person's wishes are known and plans have been put in place in advance.'

Tackling stigma

Dave recognises that discussing end of life care is not easy. He says,

'There is still a stigma around dementia, and there is an even bigger stigma around dying. Put the two together, and it's very hard for people to talk about.'

Although its ultimate aim is to improve end of life care for people with dementia, the project takes this sensitivity into account and is open to carers who are facing difficult decisions at any stage of the dementia journey.

Facing the Future currently has eight trained volunteers, all of whom have had experience of caring for someone with dementia through every stage of the illness. They offer a listening ear, share their experiences and provide advice and support to current carers. Up to six meetings are offered initially and are held in settings such as a café or care home. Carers can contact the service again as their circumstances change and they require further support.

Dave says,

'A lot of people talk about living one day at a time but in the back of their minds they can have fears about what might happen in the future. Talking about these worries can help people to plan ahead.'

Enabling carers to talk to people who understand is a key element of the service. Dr Amanda Thompsell is the Dementia Clinical Champion for the Modernisation Initiative End of Life Care Programme. She says,

'By putting people in contact with former carers who have had a relative with dementia who has died, they can get advice and support, knowing that person understands what they are going through.'

Sharing experience

Norma Prior cared for her husband Allan, who had fronto-temporal dementia, until his death in 2006. She is now using her experience of caring to help others as a Facing the Future peer support volunteer.

Norma says,

'The power of peer support is that carers know they are not alone and that someone else understands what they are going through. I found caring very isolating because I didn't know anyone who had 'been there'. I understand how carers are feeling and what the next stages of dementia will bring. Although their circumstances are different, the emotional journey is very much the same.'

Volunteers are sensitive to the fact that not all carers are ready to think about end of life care. Norma says,

'It's important to bide your time. Recently a lady I support asked how Allan died. This gives me a way into the subject, and I can return to it at a future session, perhaps by saying that I hadn't had the opportunity to make an advance care plan for Allan, but that she might consider it for her husband.'

Points that can be raised

• Planning ahead for decision making, for example through a lasting power of attorney.
• How decisions can be made about the person's care and treatment if they no longer have the capacity to make their own decisions. For example, carers can ask for a 'best interest meeting' at which all the people involved in a person's care, including their family, come together to plan their care. 
• Talking to health and care staff, and also the wider family, about the best interests of the person with dementia.
• Where the person with dementia would prefer to die, and who should be with them.
• Talking about food and hydration at the end of life.
• Discussing treatments at the end of life.

If you live in Lambeth or Southwark and would like to contact the Facing the Future team, call 020 7095 1531.

*For more information about the Modernisation Initiative, visit www.gsttcharity.org.uk