Clive's Story

Clive was in his mid-forties when his career as an Army officer suddenly nose-dived. He had difficulty communicating with his colleagues, and his written work became increasingly terse and inadequate. He was made redundant in 1992; he was 45 and his children were 3 and 4. He never worked again.

After a fraught year of failed job applications and difficulties in coping at home, Clive was forced to look for a reason for his difficulties. Clive was diagnosed with early onset dementia in December 1993.

Clive lost the ability to read and write. He couldn't read a bed-time story to his children. He lost his driving licence, but still cycled everywhere. He became obsessed with time-keeping, and often delivered his children to school an hour early.

Clive had been a marathon runner and scuba diver. He was frustrated that his fastest-ever marathon time was 3 hrs and 01 minute - he was always hoping that his next marathon would be just 1 minute faster.

He rarely admitted that things were beyond him, and tried to live as normal a life as possible. He refused to accept help, and very little help was available. He attended a local day-centre for the elderly, and was often mistaken for a helper. He described himself as "half man, half biscuit", and cheerfully admitted that, while not very bright, he could lift heavy weights!

Clive's difficulties got worse, and he started to get lost. One day he went for a walk, and was eventually found 20 hours later and 25 miles away. I could no longer look after him and the children; Clive had to be looked after elsewhere. The only place prepared to look after him was 50 miles from his young family.

Clive was moved from nursing home to nursing home as his illness progressed, and his behaviour grew more challenging. He lost his speech entirely, but could still sing a few snatches of song. He never admitted defeat, and walked continuously, even when he started to walk into doors because he could no longer work out how to open them.

Clive died in 1999. He was 51.

By Helen Beaumont, wife of Clive and a Founder of The Clive Project

Read more in this Mail Online article...

Pre-1996

• Steering group formed to respond to pleas for help from families of a few younger people with dementia. The group included partners, the local Alzheimer's Society branches, and Inter Agency Day Care Group, a local charity offering day care for older people.

1996

• Research and development worker employed by Alzheimer's Society Oxfordshire Branch to research needs and location of the younger people with dementia in the county. A needs and wish list is compiled from the younger people and their families' responses.

1996 to 1998

• We plan an effective way of offering individual support and fundraise to make a small beginning.

1998

• Launch of the one-to-one support service for younger people with dementia in Oxfordshire. Four trained support workers join the one existing worker. The Clive Project works as a service within another local charity, Inter Agency Day Care Group Oxford. We provide 920 hours of direct support.

1999

• We are finding our feet - the one-to-one support team expands from 4 to 6, and increases the direct hours of support provided to 1750. The service is externally evaluated by Oxford Dementia Centre, with good results.
• The need for appropriate short breaks and long-term care and accommodation for younger people with dementia is researched and The Clive Homes Project group forms to address this lack of service.
• In co-operation with Oxfordshire Advocacy Group and the Alzheimer Society, we help develop ADAPT - All Age Dementia Advocacy Project.

2000

• The Clive Project won a Department of Health Social Care Award for promoting independence for younger people with dementia.
• The one-to-one service expands still further to provide 2850 direct hours of support in response to increased demand.
• The first major information resource for younger people with dementia is published, and is shared with other organisations across the UK.
• The Clive Project website is launched - this proves popular and valuable to us and to site visitors.
• Work begins with our colleagues in health and social services to develop and commission a spectrum of services for younger people with dementia. We are aware that The Clive Project plays a small part and wish to link up with those who provide the other small parts!
• The Clive Project chairs the newly formed regional forum for younger people with dementia. The forum covers six central England counties and works well for the otherwise rather isolated workers who are trying to make this work a priority.

2001

• The Clive Project Charity is established as an independent charitable company and expands its objects to include the support and care of partners and families, as well as the younger person with dementia.
• The Clive Project Club starts its monthly social activities in response to requests from the younger people to link up with others in similar situations.
• The Clive Project Exchange for partners, families and friends of people with early onset dementia pilots its first programme of informative and supportive sessions.
• The Oxfordshire commissioning for early onset dementia report, authored by The Clive Project, is published.
• We work with other local organisations to create the Oxfordshire Dementia Forum.

2002

• As a result of the commissioning report, Oxfordshire's Early Onset Dementia Network begins. This is a multi-disciplinary resource for professionals in the county - a source of expertise for the future.
• The Clive Project Exchange - an addition to the programme - a special lecture/discussion in November and a summer picnic for one and all become part of our annual calendar.

2003

• The Clive Project one-to-one support team expand to 8, enabling us to support twice as many individuals, and provide around 4000 hours of direct support.
• We make contact with Oxford Philomusica, an orchestra working within the local community, and plan to develop this link more in 2004.
• The Clive Project Exchange - we set up a 'learning together' workshop for the partners, family, support team and trustees on life story work. These workshops will become part of our annual calendar.
• We initiate a research project into the support needed by partners, families and friends - the service requested will be developed in 2004-2005
• The Clive Homes Project - we engage the interest of a major housing association in developing and building a place to offer short breaks and long term accommodation and care for younger people with dementia.

Founders

Helen Baker, Helen Beaumont, David Birch, Betty Rostance, Elizabeth King.


Trustees



Director



Administration, Finance, Newsletters and Events



One-to-One Support Service

We have a team of dedicated, trained specialist support workers working individually with younger people with dementia.






Family Support Service

We have dedicated, trained specialist support workers providing individual and group support to the families and friends of younger people with dementia.

Patron: Baroness Susan Greenfield CBE

Baroness Greenfield has been Professor of Synaptic Pharmacology since 1996 at Oxford where she continues to head a multi-disciplinary research group. She is also Director of the Institute for the Future of the Mind. She was awarded a CBE in 2000 and granted a non-political Life Peerage in 2001.

Susan has written a number of books disseminating science to academic as well as non-academic sectors, exploring topics including the basis of consciousness and human nature. Her latest book, ID: The Quest for Identity in the 21st Century, is an exploration of what it means to be human in a world of rapid change and, by drawing on the latest findings in neuroscience, looks at how we can promote our own individuality.

2009 GlaxoSmithKline IMPACT Award

The Clive project were winners of a 2009 GlaxoSmithKline IMPACT Award in partnership with the Kings Fund.

What is an IMPACT Award for?

• acknowledgement of outstanding work
• excellent contribution to community healthcare

What does IMPACT stand for?

I    Innovation
M   Management
P   Partnership
A   Achievement
C   Community Focus
T   Targeting Need

And the judges said?

"The Clive Project addresses a significant gap in provision imaginatively. It is an inspiration to other areas. It has developed good partnerships and shares good practice."

"Truely client-centred services. A forward thinking and impressive organization working in a very underserved area."

"The Clive Project is an impressive organization that has progressed extremely well since 1998. It is highly valued both by members and other service providers as a specialist resource that works alongside younger people with dementia and their families during their journey from diagnosis to death. It tailors its support to the particular circumstances for the family and can claim to be truly person-centred, demonstrating a real understanding of the impact and challenges of living with the condition. It is well managed and can demonstrate good achievements, partnership working and community focus."

What did we win?

A donation of £25,000, five days excellent leadership training for two staff and some great publicity!
Visit the IMPACT website to find out more

Kings Fund Information and Library Service

The King's Fund Information and Library Service is a free unique source of information on health and social care policy and is staffed by a team of expert information specialists. Visit the Kings Fund Library

Department of Health Social Care Award 2000

The Clive Project won a social care award in the first year of the Department of Health Scheme. The Award was for promoting independence for younger people with dementia.