What is dementia?

Dementia is an umbrella term used to describe a group of symptoms associated with a decline in the way the brain functions. There are many types of dementia which, among other things, affect people’s memory, their ability to communicate, and their relationships.

Alzheimer’s disease is the most common form of dementia. It is caused by plaques and tangles developing in the brain, which leads to the death of brain cells. Vascular dementia, which is the second most common form of dementia, is typically caused by a series of minor strokes that affect the supply of blood to the brain. Dementia with Lewy bodies accounts for approximately 10% of those diagnosed. Lewy bodies are small protein deposits within nerve cells that disrupt the brain’s usual functioning.

Fronto-temporal dementia, which is relatively rare, is caused by damage to the frontal lobe and/or temporal parts of the brain.

Who is affected by dementia?

The number of people with dementia in the UK will double to 1.4 million by 2040.

Two-thirds of those with dementia are women. Twenty-five million of the UK population have a family member or close friend with dementia. Approximately 670,000 people in the UK act as primary carers for those with dementia, which is estimated to create a savings to the UK economy of over eight billion pounds per year. Currently about 2.75 million health and social care staff are caring for people with dementia.

What is being done about dementia?

Living Well with Dementia: A National Dementia Strategy (2009) outlines the government’s objectives for supporting people with dementia in the UK:

• Improving knowledge and awareness of dementia in order to remove stigma and demonstrate that people can live well with this condition.
• Ensuring that people with dementia receive a proper diagnosis that enables them to receive an effective intervention and gain access to the information and services they need.
• Developing a variety of services designed to meet the changing needs of people with dementia and their carers.

The Dementia Action Alliance is an affiliation of over 2274 organisations committed to improving the quality of life of people with dementia and their carers. Each organisation is committed to making the following seven outcomes from the National Dementia Declaration a reality for people with dementia and their carers:

• I have personal control and choice or influence over decisions about me.
• I know that services are designed around me and my needs.
• I have support that helps me live my life.
• I have the knowledge and know-how to get what I need.
• I live in an enabling and supportive environment where I feel valued and understood.
• I have a sense of belonging and of being a valued part of family, community, and civic life.
• I know that there is research going on which delivers a better life for me now and hope for the future.

Online resources about key aspects of dementia:

Basics about dementia

Alzheimer’s Society UK – What is Alzheimer’s disease?

This short film gives an accessible overview of the effects of Alzheimer’s disease on the brain.

Carers’ Perspectives

Healthtalk.org show the perspective of carers in a series of video clips.

See: http://www.healthtalk.org/peoples-experiences/nerves-brain/carers-people-dementia/

Seeing the person, not the dementia

Caring for Kath

My Home Life in conjunction with the Department of Health, Let’s Respect and Dementia UK has produced this short film.

Protecting people’s rights and freedom to choose

Ada’s Assessment

This video, produced by Social Care Institute for Excellence (SCIE), featuring a woman with dementia who lives alone, demonstrates how a Mental Capacity Act assessment can and should empower the person with dementia.

View here: http://www.scie.org.uk/socialcaretv/video-player.asp?guid=c621ad85-8703-43b6-93e7-8be7fa6f4266

Talking Point

An online forum for people with dementia and their carers.

http://forum.alzheimers.org.uk/forum.php

Books about dementia and dementia care

The Dementia Diaries, Matthew Snyman, (Paperback, £3.28).

This graphic novel follows four young people dealing with dementia in their grandparents looking at dementia from the perspective of a young person, and as such is full of hope and fun and deep understanding.

Contented Dementia: A Revolutionary New Way of Treating Dementia : 24-hour Wraparound Care for Lifelong Well-being, Oliver James.

Vermilion (Paperback £9.00)

A Good Practice Guide to Delivering Person-Centred Care, Hazel May, Paul Edwards and Dawn Brooker.

Jessica King Publishers (£25.00)

Person-Centred Dementia Care, Dawn Brooker

Jessica King Publishers (£15.99)

Chocolate Rain: 100 Ideas for a Creative Approach to Activities in Dementia Care, Sarah Zoutewelle-Morris.

Hawker Publications (£14.95)

Care to Communicate: Helping the Older Person with Dementia, Jennie Powell.

Hawker Publications (£16.95)

Organisations providing support