This booklet was written and researched by the Scottish Dementia Alumni, a group of people who have each been living with different diagnoses of dementia for over ten years. We are experienced campaigners who have actively fought for the rights of people living with dementia for over a decade. We are people who have had to learn how to manage our own lives
during the unspecified timescale of the dementia journey. In that time, between us we have gained a Churchill Fellowship Award, two MBE’s,
a BEM, an Honorary Doctorate from Strathclyde University, written books and booklets and been referenced in other publications. We received
grants from the Life Changes Trust and the DEEP Network which enabled us to produce this booklet and the accompanying video.
We had often heard professionals, service providers and policy makers using the term ‘self-management’ when talking about the lives of people living with dementia, but we did not know what was meant by the term. After first
receiving our diagnosis, many of us had been left largely alone for a number of years, in effect to self-manage our lives and condition.
But we were unable to get a clear definition or guidance from official or medical sources of what ‘self-management’ was, so we were keen to find out what the term means to people living with forms of dementia in different
circumstances and how the idea affects their everyday lives. Some say that self-management means having control over how you live, others express
different views. We hope that this booklet is a strong example of how those of us living with dementia in all its forms can take control of the
debate around issues which affect our ability to continue to live fulfilling lives.
The contributions to this booklet came directly from people with a diagnosis of different types of dementia. We learned that dementia is only a word that covers many personal, family and clinical contexts, but once again we found that when given the time and support, people with lived experience of their condition are very able to contribute and offer insight. This is inspiring and can positively change social, medical and personal perceptions of ‘dementia’,
and gives hope.
Download the booklet here:
Dementia and Self Management Peer to Peer Resource (WEB)
Watch Agnes and James reflecting on the development of the booklet here:
