Supporting people living with dementia and their carers: Life Changes Trust

Dementia is a condition that affects the brain, including memory and the senses. It can turn lives upside down – both those living with dementia, and those who care for them. In this case study, we look at how the Life Changes Trust worked to support them in Scotland.

We helped to set up the Trust in 2013 with a ten-year, £50 million National Lottery investment. The charity, which chose to close early in March 2022, improved the quality of life of three groups: young people with experience of being in care, people living with dementia and unpaid carers of those with dementia.

Here we focus on the Trust’s work with the last two groups. We look at how it took a “whole life” approach, recognising the different ways dementia affects people. Throughout, it worked to raise the voices of people with dementia and their carers.

The impact of the work they funded is visible both in data and the testimonies of the people who benefited. But there’s also a wider impact that’s harder to capture in numbers or words: a shift in attitudes and understanding, and in how dementia is represented and responded to across Scotland.

All from final evaluation unless otherwise referenced

Dementia is the result of damage to the brain. It is an effect of a range of diseases, such as Alzheimer’s. Dementia symptoms vary according to which part of the brain has been damaged. Many people experience cognitive problems, such as memory loss or difficulties with thinking and reasoning. This can affect confidence and self-esteem. One person, who had come to rely on post-it notes as reminders, explained, “now I wish for just one single post-it note to tell me I still have a purpose.”

But dementia can also affect sight, touch, taste, and smell. “Your eyes see, but your brain doesn’t interpret the information immediately,” explains Agnes , who has dementia. “I poured boiling water over my hands instead of into a cup and didn’t feel it,” explains another person living with the condition.

There may be a lack of understanding and recognition from outsiders, but someone with dementia can also feel overwhelmed by fear or shame. This increases the risk of social isolation, as people may feel self-conscious about taking part in everyday activities. Others face practical barriers, such as having to stop driving.

There are approximately 90,000 people living with dementia in Scotland, with the number expected to rise to 110,000 by 2030. Their unpaid carers are most commonly family members, such as spouses or children, whose lives are also changed by the experience.

In 2013, when the Trust was set up, there was growing recognition of the challenge of dementia in an ageing population, and of the pressure on unpaid carers. For Neil Ritch, Director for the National Lottery Community Fund in Scotland, these were challenges affecting “cohorts of people at a scale where a significant effort could move the dial.” The Trust was designed as a longer-term approach, a substantial investment that could inform not just practice, but also policy and the wider culture.

“People with dementia and their carers needed to know that an endowment in their name was not just about a moment in time,” explains Arlene Crockett, who directed the Dementia Programme at Life Changes Trust. Instead, it would make “change for their future and for those who were coming later on.”

For that reason, the Trust worked to drive change in several different ways and at different levels. To make immediate improvements to the lives of people affected by dementia, it gave out small grants to make home improvements, purchase technology needed to keep in touch with family, and pursue hobbies. One couple bought a wheelchair power pack, making it possible to go for walks together: before, the chair had been too difficult for the carer to manage.

Recognising that grassroots organisations often have the most immediate impact, the Trust worked in communities across Scotland to identify and address gaps in local services. The local grants funded free counselling, free transport to medical appointments, music for people in care homes and link workers to coordinate services.

The Trust’s thematic initiatives were led by people living with dementia. This included the creation of an online feedback service for health and social care, which helps people with dementia who have communication difficulties to express their thoughts about the quality of care they are receiving using interactive visual storytelling and picture symbols.

And the Trust provided strategic, long term funding to give people affected by dementia the skills and opportunities to drive improvements, transform attitudes and change systems. It did so by embedding lived experience in all areas of work – how beneficiaries were directly involved in informing the direction of the Trust, making decisions about the types of projects funded, helping organisations to adopt more participatory practices, sharing experiences, and challenging existing practice.

Establishing bold, a school of leadership, was a key part of this. It trains carers and people with early-stage dementia to scrutinise dementia policy, practice and provision. And the 100/6000 Conference was the first ever where all the speakers had lived experience of dementia or cognitive impairment. It was about “people responding to policies and consultations that affect them, their way, and then writing position papers and presenting them to the minister after the event,” remembers Arlene. “Providing solutions to the issues that affected them.”

We have deliberately funded those who are in tune with the Trust's agenda to create better lives in a way that is transformational and sustainable

Arlene Crockett, Life Changes Trust

“I expected the memory issues but when I started to have sensory challenges I did not know what was going on,” explains Agnes.

With funding from the Life Changes Trust, Agnes wrote a booklet to help people understand what was happening to them. Documenting her own and others’ experiences, she hoped to “give the reader ideas on how to make the lives of people with dementia more pleasant, allowing them to be more socially included and no longer feeling alone.”

In Scotland alone, at least 33,000 people have read her booklet. It has been distributed internationally, widely translated, and influenced training and guidance in a number of organisations.

After this success, the Life Changes Trust supported more resources created by people living with dementia and their carers. Martin wrote about work after a diagnosis of dementia, while Ron outlines how the Amazon virtual assistant Alexa can be a useful tool for people living with dementia. The Scottish Dementia Alumni wrote about Dementia and GP services.

I had to learn so much the hard way, and while I would never tell anyone what to do it is good to think I might save someone else some time and stress by sharing my story.

Carer

Many people living with dementia want to stay living at home, but our homes aren’t always as safe as they could be. Simple adjustments can make the difference between staying at home and having to move into care or ending up in hospital after a fall or accident.

The Trust spotted an opportunity to make a difference here. If equipment and adaptations could be provided soon after diagnosis, they could prevent crisis. So, in partnership with Care and Repair Scotland, it employed people in Aberdeen, Angus, Lochaber, and Lochalsh and Skye to make home safety assessments.

Working with the householder, they chose equipment and adaptations, such as daylight bulbs and grab rails. In Angus, the share of homes people with dementia were living in and assessed as being “safe” or “very safe” went from 37% at assessment to 80% after adjustments.

One client kept forgetting to switch off the cooker. The officer installed locks that meant it couldn’t be used, along with a telecare system – a remote care package with sensors and smoke alarms. When a fire broke out in the home, these alarms were literally life-saving.

And the service was personal: it recognised what mattered to people. John had built his own home when he was younger, including hand-made banisters. To meet his new needs, staff sensitively adapted the banister, rather than just replacing it. It avoided jarring change, and maintained something John had created. Other equipment, such as a toilet frame and bed sensor, helped him to maintain his dignity. Through these adaptations, he was able to stay in the house he built until his death.

Learning from the pilot has had lasting impact. One branch of Care and Repair embedded a focus on dementia into its strategy, while five more have mirrored the dementia-friendly practices in their other services. In Aberdeen, the officers are represented on committees for health, social care, housing, and independent living. They also work in partnership with the city’s occupational therapy team, who can now supply and fit handrails.

Made us feel like someone really cared about us.

Carer, Dementia Enablement Project

Keeping people safe goes beyond physical adaptations. Older people are at higher risk of financial abuse, and those living with dementia are especially vulnerable. Quite apart from financial consequences, scams cause fear and distress, with serious mental health impacts. In 2017, the Life Changes Trust funded a pilot scams prevention project in Angus, South Ayrshire and East Renfrewshire.

One couple were receiving a high volume of scam mail and calls. After entering their personal details in “competitions”, the couple’s information had been sold to scammers. They were also sending money to known scammers for purchases and subscriptions.

When Trading Standards first visited, they collected eight bags of scam mail. The team set up a call blocker and arranged for mail to be redirected to the couple’s granddaughter. There hasn’t been a single scam or nuisance call since, helping to reduce stress and worry for the family.

Scam prevention can make the difference between living independently and moving into residential care. As one carer explained, her mother would rush to answer the phone, whatever she was doing – risking “a fall or leaving something unattended while cooking… I do believe it has been an important factor in allowing my Mum to stay in her own home for longer.”

It’s one thing to read about it but to actually meet people who knew people who had frontotemporal dementia, which is what my husband’s got, was really helpful… I wanted that information [and] that’s where I got it really in a way that made sense to me.

Participant, Dementia Café

A community is only dementia friendly if it’s seen that way by people living with dementia. For that reason, the Trust funded 40 organisations to create Dementia Friendly Communities – communities where people are valued, respected, and empowered to go on doing the things that matter to them.

Some communities were geographical, others based around a common interest. Kirrie Connections, a dementia support hub in Angus, used National Lottery funding to create a dementia-friendly garden, improve signage around the town, and raise awareness at local schools. Scottish Ballet set up a programme of intergenerational dance-based activities for people living with dementia, their carers and families.

People feel happy in these communities. When she was first diagnosed, Carol - who has early onset dementia - was terrified. “I didn’t want to see people,” she remembers. “I was making silly mistakes, I was doing all these things and I was more and more and more not wanting to go anywhere or do anything, because I just felt so stupid.”

Attending the drop-in café at St Andrew’s church in Carluke was life-changing. She found it was a place where “You feel safe… that’s the thing I felt when I walked into the hall, I felt safe, and I could just be me.”

The idea for the café came from church members who cared for family members living with dementia. They knew there was a need for support, beyond statutory services. And they welcomed input from attendees in planning the activities, from health walks to making personalised music playlists.

For Carol, it’s opened new avenues. “Just this year she’s met the Queen,” says Malcolm, her husband and full-time carer. “She’s been on the radio. She’s been interviewed for Glasgow Live. And this has all come from the drop-in centre.”

Malcolm has found a new network, too: “I lost contact with nearly all my friends, you don’t have time to see them, but I’ve got a new group. I’ve got a new group of people who I look forward to seeing.”

Dementia friendly communities helped to create broader changes in attitudes and understanding. Dementia Friendly Dunblane encouraged residents, voluntary and commercial organisations to “sign up” to making Dunblane a better place to live as a person with dementia. It involved people with dementia and carers in developing new plans for the town, and created welcoming opportunities to join wider community activities, such as bowling, or the local lunch club.

Our service users who have dementia don’t want just dedicated services. They want to be part of what’s going on; they don’t want to be separated. I think that’s been really key to the way that our dementia services have rolled out.

Lynsey Neilson, Glasgow’s Golden Generation

Life Changes Trust wasn’t alone in centring lived experience, but for Neil Ritch, “what matters is doing it well. And they did it well.” The Trust’s 25 members of staff were supported by advisors from each of its beneficiary groups. Advisors played an active role in nearly all activities, including funding decisions. Some of the funded organisations, such as Dementia Friendly Prestwick and Deepness Dementia Media, are led by people with dementia.

For Neil, the Trust’s approach worked due to “skill and commitment from the staff team, commitment of people with dementia themselves to fulfil the advisory roles, and the commitment of trustees to be engaged with learning and hear from those folk.” More broadly, the Trust showed him that “there are different ways of being articulate, and times when you just need to let people speak.”

Conferences were co-chaired by people with dementia. “That was really powerful,” remembers Kirsty Nairn, Head of Business Support at the Fund. At the time, “the medical profession, subject matter experts and academics, social care professionals” tended to do the talking at conferences – “never people with dementia themselves”. It was a significant and very effective shift: “they invited the academics and the medical professionals to come and listen, not to be centre stage. That’s a sea change.”

And charities who worked with the Trust went through a similar transformation. For Kirrie Connections, it meant a completely different approach. “When we put that first application in to the Life Changes Trust, there were no people with dementia involved,” remembers chief executive Graham Galloway. By the second application, people with dementia were involved “in absolutely everything we did”. For Graham, it’s a journey that, “not just the Trust, but all of Scotland has been on” – and not just as a “tokenistic tick box exercise but actually embedding people in the process”.

And this approach has paid off. “If you want to solve a hard problem, you need to move lots of different things,” Neil Ritch explains. In the early days of the Trust, he remembers being “a typically impatient funder”, asking what was being done. “A wise member of staff at the Trust said, ‘We’re making lots of small waves, but don’t worry – they’ll come together in a bigger wave.’”

The Scottish Government’s recent £1 million investment in support after dementia diagnosis, with a focus on building community capacity, is an example of one of these bigger waves. Evidence from the Life Changes Trust’s Dementia Friendly Communities strand “was significant in this funding being awarded.”

Neil Ritch, Director for the National Lottery Community Fund in Scotland

Kirsty Nairn, Head of Business Support at the National Lottery Community Fund

Arlene Crockett, Life Changes Trust

This case study is based on interviews, independent research and case studies from Life Changes Trust.

Published 15 August 2022