Patricia Collen, pictured above, lived at Normansfield long stay hospital from 1926 to 1997
Ageing Well: Understanding the needs of people with learning disabilities as they grow older
BILD began the Ageing Well project after receiving funding from Patricia Collen's estate. The aim of Ageing Well was to provide up to date information to support older people with a learning disability to live a fulfilling life.
Through this project we hope that people with a learning disability will be better informed about the ageing process, how it might affect them and what they can do to lead an active and fulfilling life.
The project has been developed to provide information for:
- people with a learning disability
- family carers and support workers
- learning disability support providers,
- local authority social workers and commissioners
What have we done so far?
The Ageing Well project enabled us to create a wide range of resources, information and events to promote a better understanding of the lives and needs of older people with a learning disability and bring those interested in the subject together.
We also created an information hub on ageing and people with learning disabilities, find out more on the Ageing Well section of our website >
1. Created new resources
The BILD factsheet on ageing
We have created a BILD Factsheet on the issues of older people with a learning disability.
Download the factsheet >
Easy read factsheets about ageing
We also created a group of easy read factsheets about growing older with a learning disability. The factsheets cover a range of topics including moving home, things getting harder and people dying.
They were produced in partnership with the GOLD group (pictured above), who came together over 14 years ago to think about Growing Older with Learning Disabilities.
Download the Easy Read Factsheets >
Supporting older people with learning disabilities: a toolkit for health and social care commissioners
We commissioned the NDTi to produce Supporting older people with learning disabilities; a toolkit for health and social care commissioners. The toolkit contains links to further resources as well as a self-assessment framework.
Download Supporting older people with learning disabilities >
3. Two Easy Read dementia factsheets:
In partnership with Alzheimer’s Society, we created two Easy Read factsheets on dementia for people with learning disabilities:
What is dementia?
This factsheet covers who can get dementia, diagnosis, treatments and actions we can take now to help prevent us getting dementia.
Download What is dementia >
Supporting a person with dementia:
This factsheet covers living with dementia, communication, staying active and behaviour differences.
Download Supporting a person with dementia >
The Alzhiemer's Society produced an article about the launch of these dementia factsheets, read about it here >
2. Raising the profile of ageing and learning disabilities
Learning Disability Week
We used Learning Disability Week to highlight the issues around ensuring people with learning disabilities get the support they need to enjoy life as they get older.
We sent out a newsletter each day:
- Day One focused on what older people are telling us about what is important to them and some of the background information about support for older people with learning disability, see the newsletter >
- Day Two: We looked at older families and support for family carers, see the newsletter >
- Day Three: We looked at the challenge for providers in planning and delivering good support for older people with a learning disability, see the newsletter >
- Day Four covered health, well being and good dementia support, see the newsletter >
- Day Five provided a roundup of the key issues from the week including messages from a number of people about what we need to do next, see the newsletter >
We have produced a brief roundup of the issues raised in this week. Download >
Patricia Collen, pictured left, lived at Normansfield long stay hospital from 1926 to 1997.
Her story was first told in the book, 'Tales of Normansfield: The Langdon Down Legacy' by Andy Merriman.
You can read more about Patricia Collen in and an article by Heather Cadbury and Michelle Whitmore, 'Spending time in Normansfield: change in the day to day life of Patricia Collen', which appeared in the British Journal of Learning Disabilities in 2010. (Vol 38 pp 120-126). Reproduced with the permission of the Publisher. © 2010 Blackwell Publishing Ltd.
These two accounts showed the huge changes that took place in the lives of many people with learning disability over this time.
Patricia's own story was particularly interesting as it involved her entering a private hospital in the 1920s, losing contact with her family and experiencing significant privations during the Second World War.
Patricia saw the 'nationalisation' of Normansfield into the NHS in 1951, and experienced the restrictions placed on all its residents by the management regime of the 1960s - exposed in the Sherrard Inquiry in the 1970s - which meant residents like Patricia lost a lot of their individual identity and spent long periods with no occupation or stimulation.
The closure of Normansfield was announced in 1992, around the same time as the official solicitor traced Patricia's cousin, and the Court of Protection agreed that her money, which had accumulated over the years, could be spent on providing a home and live-in carers. Over time, her new surroundings helped Patricia to blossom and become part of her community.
Sadly, Patricia Collen has now passed away but her cousin has worked with BILD to develop a programme of work, funded by Patricia's estate, that aims to develop a set of resources on ageing well to help support older people with a learning disability to lead a fulfilling life.
These resources will be aimed at people with learning disabilities, support workers and managers and commissioners of services and it is hoped that this work will provide a fitting testimony to the life of Patricia Collen.
If you would like to know more about Patricia Collen and her life, find out more from the Langdon Down Museum of Learning Disability website >