(pictured: Time to Share carer Celia McKechnie,left, with Mary and her husband Roy Willis, who has dementia)
Shared Lives schemes are increasingly being used to support people with dementia and they are proving cheaper than alternative forms of help, reports Natalie Valios
● Project: name and location: Time to Share scheme, Falkirk.
● Aims and objectives: To provide short breaks for people with dementia in family homes, enabling them to enjoy a different environment and develop a trusting relationship with one carer.
● Number of service users: 12
● Number of Time to Share carers: Five.
● Annual cost: Budget from Falkirk Council is £41,000.
Shared Lives schemes (formerly known as adult placements) have tended to be pigeonholed as a learning disability service but a growing number are beginning to support people with dementia.
Alex Fox, chief executive of umbrella body Naaps, says: “We now have a business case that demonstrates it’s cheaper than alternative support, so that has increased interest. There are now enough services around for people to start learning from each other.”
A scheme that many could learn from is one of the longest running, the Time to Share scheme set up 15 years ago under Falkirk Council’s Joint Dementia Initiative, a multi-agency scheme to improve the independence and well-being of people with memory problems. Time to Share provides short breaks for people with dementia in the homes of Shared Lives carers.
“We were trying to look for different ways of providing services for people with dementia and their carers, by moving away from traditional residential/nursing home respite to offer a more personalised, flexible service that enables people to do normal, everyday things,” says Cathy Dunn, project worker for Time to Share.
Although the primary reason for using Time to Share is to give the carer a break, Dunn stresses that the break is as much for the service user. “We try to make sure that their stay is as comfortable as possible so that they feel that it is not just a service getting done for them but they can decide the kind of things they want to do. It’s giving them a holiday with a bit of support.”
While care workers come and go in traditional short break schemes, Time to Share carers provide a consistent source of support. “Rather than someone having to adapt to the routine of a home we try to make it the other way round so we adapt to the person’s need and they live as part of the family in a normal environment,” says Dunn.
To make this work, the right match between client and carer is crucial. When someone is referred – most commonly by a social worker, but sometimes by a community psychiatric nurse or families themselves – Dunn makes the match by spending time getting to know them.
“I try to find out as much as I can about their likes and dislikes to try and match similar interests; some clients like a quiet setting, some a more urban one; some like to go out every day, others are happy to sit and look at a magazine; and others like to meet the carer’s friends and family when they come round.”
After deciding which of the Time to Share carers will suit, Dunn takes the service user and their family to the carer’s house for an informal, short visit. This is gradually built up until everyone feels confident enough for a longer break.
“Some people accept [the service] quickly, others are a bit more unsure so we make the introductions to the carer at their own pace.”
There are 12 service users who can each use the service for about six weeks a year; the length of each stay can be anything from overnight to two weeks, though one week is the norm. Currently there are only five Time to Share carers – some single, some couples.
“Ideally we would love to have more but it’s difficult to get the right people,” says Dunn. “The recruitment process is slow because of the nature of the job. We introduce prospective carers to our services to see how they interact with people, whether they are patient, tolerant and have a sense of humour. I write a report on them that is presented to a panel – made up of a social worker, community psychiatric nurse, carer, client and my team manager – who interview them and decide whether to approve them or not.”
Two Time to Share carers now take couples – where one has dementia and one is their carer. “This was developed because many older people are reluctant to accept services or don’t want their husband or wife to go on their own,” Dunn says.
People usually use the scheme until they need residential care and feedback from family carers is that, without the service, many clients would have gone into residential care far earlier.
Though this is anecdotal, this is certainly the gut feeling of Jane Bell, chief executive of the South West Adult Placement Scheme (Swaps). However, she should be able to test this belief as Swaps has been awarded £100,000 over three years by the Esmée Fairbairn Foundation to evaluate and support the setting up of Shared Lives services for people with dementia across the UK.
And although they are mainly used for short breaks, Bell has not ruled out the possibility of a longer-term option. “I think it could be used for six months to a year in some situations as an alternative to residential care where a carer can’t cope but doesn’t want to put their loved one in a care home, or for older people who live on their own.”
Anthropologist Roy gets quiet spot to read his books
“Celia is generosity itself. She and Roy get on like a house on fire,” says Mary Willis of the relationship between her husband and their Time to Share carer, Celia McKechnie.
Roy was diagnosed with dementia in 2003 and the couple have been using the Time to Share service in Falkirk for about three years. “The location was a big consideration for Roy,” says Cathy Dunn, who matched them. “He was an anthropologist and brings his books with him. It is serene at Celia’s and he likes the quietness to read them.
“Celia lives on a farm and, as Roy likes looking at wildlife, it is ideal. She has binoculars set up at a big window in the sitting room.”
“The first day I saw Celia I thought she was an absolute gem, a genuinely caring person,” says Mary. “She includes Roy in everything the family do; he gets a front seat at the Highland shows they go to. Her husband is a good musician and Roy plays the African drums so there is a connection there. Celia takes him out a huge amount and he is treated like one of the family.”
McKechnie cared for her own father when he had dementia and this left her wanting to help other people in the same situation. After working in a care home she joined Time to Share about 12 years ago. “I love doing it. Being in your own home means there is a family atmosphere and you really get to know someone. It is far better than residential care, it’s a normal life.”
Roy also uses the Falkirk Joint Dementia Initiative’s Home from Home service on Wednesdays, which provides day care for a small group based in a family home, and on Thursdays Mary brings another JDI client back to the house to play chess with him. On Fridays, Roy has a buddy who takes him out for the day.
Roy currently visits McKechnie three or four times a year, and although Mary says this may increase as she gets older, she adds: “I hope to put off residential care forever.”
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This article is published in the 4 November 2010 edition of Community Care under the headline “Helping dementia patients with a wider family circle”