A retirement focused on dementia care: Ann Pascoe

A retirement focused on dementia care: Ann Pascoe

A retirement focused on dementia care: Ann Pascoe

Introduction

Retired Ann Pascoe (CF 2012) brought her lived experience of family dementia to a ground-breaking Fellowship that has created local care services and influenced UK government policies.

"I was told a Churchill Fellowship would change my life and it does, it absolutely does." - Ann Pascoe, Fellow

In 2002, Ann Pascoe and her husband Andrew retired to Portgower, in the heart of the rural Highlands of Scotland. Four years later, Andrew was diagnosed with vascular dementia. As his carer, Ann had very little understanding of the challenges and stigma surrounding this condition and found that there was limited support available to her. Some 850,000 people live with dementia in the UK, and for those in rural communities the challenges are magnified.

By 2012, Ann knew she had to do something. She had heard the Indian dementia expert Dr Amit Dias speak at the Alzheimer's Disease International Conference in Toronto, and was intrigued by Dias' strategy of using ordinary laypeople to detect early symptoms of dementia and carer stress. So, aged 66, she applied for a Churchill Fellowship to travel to India and see this model in person. Whilst there, she visited Dias’ grassroots homecare project and saw how it reduced behavioural problems in dementia patients while also reducing the burden on caregivers and improving their mental health.

Ann returned to Scotland inspired by what she had seen and ready to take action. Together with some like-minded local people, she established a local social enterprise, Dementia Friendly Communities (DFC). This had the simple aim of recognising and embracing the challenges that a life with dementia presents to the families affected, and enabling them to live this life to the full.

Within a year DFC had expanded rapidly, taking significant steps towards raising the local profile of dementia and drawing together strong support across the community. Ann shared the results of the programme along with her Fellowship findings at several high-profile events with the Scottish NHS and at gatherings like the Alzheimer Europe Conferences in Warsaw, Malta and Glasgow, as well as the Alzheimer Disease International Conference in Taiwan. Ann’s campaigning and the success of DFC led to a partnership with NHS Highland and Alzheimer Scotland to evaluate rural aspects of the Scottish Government’s Dementia Strategy.

In 2015, DFC received £225,000 in funding from the Life Changes Trust to develop the first Scottish rural dementia-friendly community and three years later a further grant to roll out that programme to eight rural communities in Scotland. Through this work, DFC offers regular social activities, arts programmes and a Dinner to Your Door service, which during the pandemic was delivering up to 90 freshly cooked nutritious meals per day in the local area. In 2020, DFC received a funding package from NHS Highland to implement the carer stress programme that Ann had seen on her Fellowship. These initiatives support patient wellbeing and relieve the burden on carers.

DFC now works with more than 18 partners, all sharing a vision of transforming rural communities into compassionate socially inclusive ones for all older people, not just dementia families. In particular, it has brought the existing Scottish Dementia Strategy down to a grassroots level, to make a real difference to the lives of families and individuals in the local community. This was one of Ann’s original Fellowship objectives.

On a personal and professional level, Ann’s Fellowship has had a significant impact. In 2014 she was invited to join the Prime Minister's Rural Dementia Communities Task and Finish Group, which changed UK policy on dementia. She also joined the Scottish Government Dementia Strategy working group and the NHS Highland Board as a non-executive director. She was appointed a Trustee of the Life Changes Trust, which works with people living with dementia, and their carers. During this time, she also gained an MSc in Dementia from Stirling University.

Currently Ann is working to set up and run a new pilot programme to support carers in her local area, which if successful will roll out to rural areas across the Scottish Highlands, for which she was awarded one of our Activate grants in 2020. The pilot will provide carers with a single point of access for immediate physical and emotional support within their local community, bringing carers and communities together, and relieving some of the burden they carry. Ann will gather evidence from this pilot to include in the Highland Carer Strategy.

Ann says, “I was told a Churchill Fellowship would change my life and it does, it absolutely does. It gave me the credibility I needed to do the work I’ve done. Before this, I had lived experience of dementia but nobody would listen to me. My Fellowship changed everything. It gave me the wherewithal to do all the things I wanted to do.”

"I was told a Churchill Fellowship would change my life and it does, it absolutely does." - Ann Pascoe, Fellow

In 2002, Ann Pascoe and her husband Andrew retired to Portgower, in the heart of the rural Highlands of Scotland. Four years later, Andrew was diagnosed with vascular dementia. As his carer, Ann had very little understanding of the challenges and stigma surrounding this condition and found that there was limited support available to her. Some 850,000 people live with dementia in the UK, and for those in rural communities the challenges are magnified.

By 2012, Ann knew she had to do something. She had heard the Indian dementia expert Dr Amit Dias speak at the Alzheimer's Disease International Conference in Toronto, and was intrigued by Dias' strategy of using ordinary laypeople to detect early symptoms of dementia and carer stress. So, aged 66, she applied for a Churchill Fellowship to travel to India and see this model in person. Whilst there, she visited Dias’ grassroots homecare project and saw how it reduced behavioural problems in dementia patients while also reducing the burden on caregivers and improving their mental health.

Ann returned to Scotland inspired by what she had seen and ready to take action. Together with some like-minded local people, she established a local social enterprise, Dementia Friendly Communities (DFC). This had the simple aim of recognising and embracing the challenges that a life with dementia presents to the families affected, and enabling them to live this life to the full.

Within a year DFC had expanded rapidly, taking significant steps towards raising the local profile of dementia and drawing together strong support across the community. Ann shared the results of the programme along with her Fellowship findings at several high-profile events with the Scottish NHS and at gatherings like the Alzheimer Europe Conferences in Warsaw, Malta and Glasgow, as well as the Alzheimer Disease International Conference in Taiwan. Ann’s campaigning and the success of DFC led to a partnership with NHS Highland and Alzheimer Scotland to evaluate rural aspects of the Scottish Government’s Dementia Strategy.

In 2015, DFC received £225,000 in funding from the Life Changes Trust to develop the first Scottish rural dementia-friendly community and three years later a further grant to roll out that programme to eight rural communities in Scotland. Through this work, DFC offers regular social activities, arts programmes and a Dinner to Your Door service, which during the pandemic was delivering up to 90 freshly cooked nutritious meals per day in the local area. In 2020, DFC received a funding package from NHS Highland to implement the carer stress programme that Ann had seen on her Fellowship. These initiatives support patient wellbeing and relieve the burden on carers.

DFC now works with more than 18 partners, all sharing a vision of transforming rural communities into compassionate socially inclusive ones for all older people, not just dementia families. In particular, it has brought the existing Scottish Dementia Strategy down to a grassroots level, to make a real difference to the lives of families and individuals in the local community. This was one of Ann’s original Fellowship objectives.

On a personal and professional level, Ann’s Fellowship has had a significant impact. In 2014 she was invited to join the Prime Minister's Rural Dementia Communities Task and Finish Group, which changed UK policy on dementia. She also joined the Scottish Government Dementia Strategy working group and the NHS Highland Board as a non-executive director. She was appointed a Trustee of the Life Changes Trust, which works with people living with dementia, and their carers. During this time, she also gained an MSc in Dementia from Stirling University.

Currently Ann is working to set up and run a new pilot programme to support carers in her local area, which if successful will roll out to rural areas across the Scottish Highlands, for which she was awarded one of our Activate grants in 2020. The pilot will provide carers with a single point of access for immediate physical and emotional support within their local community, bringing carers and communities together, and relieving some of the burden they carry. Ann will gather evidence from this pilot to include in the Highland Carer Strategy.

Ann says, “I was told a Churchill Fellowship would change my life and it does, it absolutely does. It gave me the credibility I needed to do the work I’ve done. Before this, I had lived experience of dementia but nobody would listen to me. My Fellowship changed everything. It gave me the wherewithal to do all the things I wanted to do.”