There will soon be over a million people living with dementia in the UK – and each and every one of them is disabled, not only by the symptoms and challenges of the condition itself, but by many unnecessary societal and environmental barriers. While others are working on treatments and cures which may help those affected in the future, we are committed to tackling the non-medical barriers they face in the here and now. We believe that we all have the power to change or minimise these barriers, by making adjustments both to the physical environment, and to our attitudes and behaviours, and by adopting a rights-based approach. And we know that we can do this – if we all work together.
In the past couple of years, Innovations in Dementia has collaborated with 8 other major dementia organisations, who have come together as One Dementia Voice (ODV). We have produced a vision based on what people with dementia have told us about these barriers, and what we know about their human rights.
Our vision is that:
- We must focus not only on the medical aspects of dementia, but also on the many other barriers which disable those affected.
- We must address these societal and environmental barriers proactively, thinking more about rights, citizenship, inclusion and equality.
- In this way we can each play our part in bringing more hope and meaning to the lives of those of us who live with this condition.
Our vision is about hope, enablement and positivity. Recognising dementia in terms of disability rights and citizenship can empower, and give hope to, those who are diagnosed and their families.
This approach helps us all to focus on how the disabilities associated with dementia connect with social, attitudinal and environmental factors; with the strengths, resilience and abilities of people with dementia themselves; and with the principles of solidarity and inclusion. It should help people
with dementia to access everything that others, with or without disabilities, access – and to remain active citizens and participants in their own lives. Society can also learn from them what the barriers are, and redouble its efforts to minimise them through what the law calls reasonable adjustments /accommodations.
The vision has been endorsed and tested by the nine ODV member organisations in the course of 2022. While progress inevitably takes time, it has influenced their strategic thinking, their messaging and many practical aspects of their work.
We now wish to roll out this vision much more widely. We invite YOU to take it on board and implement it within your own organisation and work.
You can access the new document ‘Dementia and Hope’ here . It sets out our starting point and the key benefits of the approach. It addresses many frequently asked questions (FAQs) and provides suggestions on how to embed ‘Dementia and Hope’ into your organisation. There are also many personal stories and examples of how ‘reasonable adjustments’ can and should be made for people with dementia. At the end (on Page 60) you will also find links to several films which we hope you will watch with your colleagues.
Do let us know your response to the vision and what you decide to do to make it reality. This is something that can unite us all!
Philly Hare
Co-director, Innovations in Dementia
