Best days

Chris and Peter were matched together by Moray Shared Lives in Scotland. Chris is a retired farmer who wanted to give people the chance to benefit from visiting his land and the woodlands he has planted. He was approved by Shared Lives Moray to take on the Shared Lives role and then matched with Peter, who visits for day support twice a week. Peter has dementia and lives at home where he is cared for by his wife. The two four or five hour sessions a week with Chris give everyone time to re-charge their batteries and lead a life beyond giving and receiving care. You can see and hear the two men talk about their Shared Life here. 

 

The film was made after Peter had recently lost his ability to walk following an adverse

reaction to prescription drugs. The time that Chris has, combined with the opportunities he provides for walking regularly, helped Peter recover his ability to walk, which has enabled him to continue to live in his own home and community. Without the time and support given by Chris, Peter is likely to have been placed in a residential care home or provided with 24 hour paid carers in his own home. In both cases his life would have diminished significantly and the costs of caring for him would have risen sharply. 

 

Peter is not always as alert and lucid as on the day of filming. Everyone involved believes that the support from Chris brings Peter some of his best days.

Shared Lives extends the natural way to connect

I was privileged to be part of our reception in the Scottish parliament.  What Holyrood lacks in history it more than makes up for by being such a welcoming, open and inspiring place, which truly feels like it belongs to Scotland’s people, especially as our host Richard Lochhead MSP was kind enough as he always is to take our members on a tour of the chamber.

We heard from people who live in Shared Lives households who talked about the transformative effects of their relationships. As Louise Kennedy said of Abby coming to live with her and her husband, “Something clicked straight away and the three of us have never look back. I’m not going to pretend that we’re the Waltons, we’re three strong personalisites sharing a home and f course there are going to  be bumps along the way, but these are part of family life and we’re very much a family. Abby is unique, and meeting her is a once in a lifetime experience…to know her is to love her.”

We launched a new report: Staying connected – Shared Lives carers supporting people living with dementia in Moray, Scotland 2019 The quotes from people involved in dementia support and Shared Lives say it all:

• ‘Loneliness is a terrible thing. Shared Lives extends the natural way to connect’
• ‘My husband goes out twice a week, with Shared Lives. He also goes to a day centre. The carers in both services are great, but the Shared Lives service is better because he’s getting out and about, going places that he wants to. It’s more stimulating.’
• ‘I know I’m doing a good job when I see the look on people’s face when I arrive to pick them up. I know some women who have started wearing lipstick again, thinking about what they’ll wear, since they’ve been coming out with me. Before, they’d lost sight of themselves.’

We all need to feel seen, not just for what we need, but for who we are. This only happens when people can get out of their own homes or care services and into the outside world, but even that isn’t enough on its own. After years of stagnation, Shared Lives is now growing in Scotland: let’s make sure that everyone in Scotland who needs support feels really seen again.

Imagine having another 8 minutes of social interaction a day

CMM reports that “Just ten minutes of social interaction a day improves wellbeing in dementia care”, according to a study by researchers at University of Exeter Medical School, King’s College London and the Social Care Institute for Excellence (SCIE). “The Wellbeing and Health for people with Dementia (WHELD) programme trained care home staff to increase social interaction from two minutes a day to ten, combined with a programme of personalised care. It involves simple measures such as talking to residents about their interests and involving them in decisions around their care.”

This is important work by the universities and SCIE, but how heartbreaking that a study is required to prove the need to people with dementia to have just ten minutes a day of social interaction, and that previously they could expect just two. What would the wellbeing and health of people with dementia be like if they received an hour a day of social interaction? What would any our wellbeing be like if we could look forward to just ten?

This is why we need socially-based models of support like Shared Lives and Homeshare, and why people consistently report that they are happier and healthier within them. We need as much investment in researching the groundbreaking impacts of these smaller, social models, as we have currently into tweaking existing models which can seem to offer people so little.

As though he hadn’t been away

This is a guest blog from Claire Morphet of Rochdale’s PossAbilities CIC Shared Lives scheme. Claire writes:

In April of this year I was approached by Harold’s daughter Lynne who gave up her job as a college lecturer to look after her dad. She has had her house adapted to support his needs and completely changed her lifestyle. Previously, when Lynne had to go in hospital, Harold went for respite in a nursing home. Although Lynne had invested many hours researching and visiting nursing homes, when Harold returned home, she described her dad as ‘losing more of himself’. Now, Lynne’s wedding was planned, but she had intense fears of leaving her dad in a traditional respite setting again.

The first time I went out to visit Harold and Lynne, Lynne described her dad as she remembered him: an amazing dad and grandad who loved children. When Harold greeted me and gave me a little dance, I was moved by the kindness in his face.  Throughout the time I spent with Lynne and her dad the love that she feels for him was evident. We chatted about Shared Lives and Lynne immediately put her trust in us. What Lynne and I experienced over the next couple of months was one of the hardest professional journeys I have taken and possibly one of the toughest journeys Lynne has had to make. During these months Harold was introduced to two Shared Lives carers, but both had to withdraw from providing support following changes in their own circumstances. Matches do not always work out, but it’s our role to keep trying until the right match is found.

Karen lives very near to Harold and visits the same Tesco that Harold regularly enjoys to visit. Her husband, Vincent, remembered Harold as a former next door neighbour when he was a child. During the two weeks that Harold stayed with Karen, we kept in regular contact. Following the short break, Karen said, “It was an absolute

New research on Shared Lives and older people

Our Director of Support and Development, Anna McEwen, writes with an update on the launch of new independent research into Shared Lives for older people from Kent University:

89 year old Betty described Shared Lives as a lifeline, allowing her and her 91 year old husband with Alzheimers to keep their dignity as they aged.  Betty got to know a Shared Lives carer who supported her for a few hours a week.  The Shared Lives carer got to know Betty and her husband which meant that when Betty had to go into hospital suddenly, her husband was able to go and stay with the Shared Lives carer.  This gave Betty peace of mind and her husband a personalised short break with someone who he knew well at a difficult time when his wife and main carer was in hospital.

PSSRU (Personal Social Services Research Unit) at the University of Kent have recently finished a 2 year research project looking at Shared Lives as an option for older people who have social care support needs.  This project was funded by the NIHR School for Social Care Research, and began before Shared Lives Plus offered dedicated support to schemes developing this area of work.  The work was not commissioned by Shared Lives Plus but in response to wider work around personalised services that deliver good outcomes at low cost. It builds on the interest and learning generated by an earlier dementia project led by Shared Lives South West and Innovations in Dementia.

The research consisted of questionnaires sent out to all older people using Shared Lives at the time to get a sense of the quality of life people using Shared Lives were experiencing and their views on the service, and then some more detailed work with 3 schemes.  The questionnaires on quality of life were compared with people using other social care services via the Adult Social Care Survey to establish the quality of life of older people using Shared Lives when compared to other forms of social care.

74% of older people using Shared Lives rated their quality of life as good or very good, and just 4% rated bad. When compared to other forms of social care and average social care quality of life (based on ASCOT), older people using Shared Lives had better overall quality of life on a par with people who do not require social care support.

Barriers highlighted by the research for expansion of Shared Lives for older people included: lack of referrals, lack of awareness of Shared Lives, familiarity with other (more traditional) social care services, budget structures and pressures in local authorities, eligibility criteria, lack of Shared Lives carers with appropriate accommodation and/or skills and perceptions of safety & accountability.

Opportunities for expansion of Shared Lives for older people included: active promotion of Shared Lives, awareness raising to social work teams, specialised training for Shared Lives carers, support from senior managers, Care Bill implementation and evidence of the benefits of Shared Lives.

This research took place at a time when Shared Lives was still a little known option for older and disabled people, and Shared Lives Plus was a tiny organisation supporting the sector.  The samples used to compare quality of life were very small and there were a number of limitations to the research because of this, although the research clearly shows how much Shared Lives is valued by the older people currently using it.

However, if the research was repeated starting in 2014, I think we would start to see a much bigger picture.  Shared Lives Plus has secured funding to offer dedicated support to the sector to develop services for older people in the form of a development officer and production of a series of tools, resources and business cases to support Shared Lives carers, schemes, commissioners and external providers.  This support has kick started a dramatic increase in schemes who are now diversifying to offer support to older people and people living with dementia, and we expect to see the numbers of older people using Shared Lives rise significantly over the coming years.

This research gives us some really useful and interesting baseline information to start from as we seek to support the development of the Shared sector, and the quotes from older people using Shared Lives speak for themselves:

“Being made to feel part of a family gives me confidence, a feeling of being wanted and not alone.”

“Shared Lives gives me something to look forward to and a purpose in life”

“It’s a lifeline, it’s contact, it’s help to live, it’s support and very valuable”

“Living with a couple in Shared Lives keeps me out of hospital.  If I am troubled with anything I can talk about it with my carer who encourages me and completely supports me”

Alternatives to day centre dementia care

The Guardian today features a depressing report from the Alzheimer’s Society on care for people with dementia: “Sub-standard care will mean 50,000 people with dementia will be forced into care homes earlier than necessary, racking up a preventable monthly bill of £70m to the taxpayer.” Whilst most people with the condition prefer to live and be cared for at home, there is inadequate help for everyday tasks such as shopping, washing and dressing, leaving family carers unable to cope.

There are day centres for people with dementia, but it was common when I was working with unpaid family carers to hear that the person with dementia found the day centre environment so stressful and came back so disorientated, that the experience was not a break for anyone concerned.

A number of Shared Lives schemes are offering an alternative to day centres.

ASA Lincolnshire’s At Home Day Resource for people with dementia, established with carer’s grant funding, provides support from 10am – 3pm, delivered in the Shared Lives Carer’s home and local community. The ASA matching process ensures the participants are compatible, with one carer supporting up to three people at a time, depending on people’s needs. Some people use it to maintain skills such as cooking, gardening, or simply eating together and using cutlery. Isolated older people welcome the manageable social experience in a consistent, familiar setting.

The service also provides a break for family carers