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Understanding dementia

It is vital that all those who support people with dementia, including nurses, have an understanding of dementia and the impact this condition has on the individual themselves and their families.

In this section of the resource dementia and its impact is considered under the following headings:

What is dementia?

Dementia is a term that is used to describe a collection of symptoms including memory loss, problems with reasoning, perception and communication skills. It also leads to a reduction in a person's abilities and skills in carrying out routine activities such as washing, dressing and cooking.

The most common types of dementia are: Alzheimer's disease, Vascular dementia, Fronto-temporal dementia and Dementia with Lewy bodies. Information is available in a section of the Alzheimer's Society website on types of dementia.

Dementia is a progressive condition, which means the symptoms are likely to get worse over time. The progression will vary from person to person and each will experience dementia in a different way.

For further information see the Open Dementia e-Learning Programme.

Why is it important to know about dementia?

The number of people with dementia is increasing and presents a significant and urgent challenge to health and social care, both in terms of the number of people affected and the associated cost.

Demographics

For further statistical information see Dementia statistics.

Human rights

Dementia has particular implications for family members or friends who are providing care and are directly affected by the changes that dementia can bring about. However it is important to be aware that with the right help people with dementia can be supported to have a good quality of life and experience a sense of well-being. For further information see supporting people with dementia and supporting carers.

People with dementia and their carers (family members and friends) have the same human rights as every other citizen. However, it is widely recognised that, in addition to the impact of the illness, they face cultural, social and economic barriers to fulfilling these. This includes the right to a proper diagnosis, access to information and support from a range of informed, skilled professionals who are able to provide individualized care.

See the National  Dementia Declaration and the Scottish Charter of Rights which are aimed at protecting the human rights and ensuring equal access to care for people with dementia and their family carers.

Finding out more about dementia  

You can find further information at:

Alzheimer's Disease International: World alzheimer report 2013: journey of caring - an analysis of long-term care for dementia
This report reveals that, as the world population ages, the traditional system of “informal” care by family, friends, and community will require much greater support. It finds that globally, 13 per cent of people aged 60 or over require long-term care but between 2010 and 2050, the total number of older people with care needs will nearly treble from 101 to 277 million.

Alzheimer’s Society: About dementia
This section of the Alzheimer’s Society website provides information on the different types of dementia and introduces resources available on the website to support further understanding.

Alzheimer's Society: Factsheets
The factsheets cover a wide range of topics and are organised under headings such as: causes of dementia, progression and drug treatment; emotional and practical support; legal and financial information.

Alzheimer’s Society: Dementia 2013: the hidden voice of loneliness
This second annual report on how well people with dementia are living found that over half of the general public believe that people with dementia have a bad quality of life. This was echoed in the feedback from people with dementia with 70 per cent saying they had stopped doing things they used to do because of lack of confidence. The majority of people with dementia also felt anxious or depressed, and a third of people said they’d lost friends after a diagnosis. It calls on commissioners to ensure appropriate support services are available, and urges people and organisations to play their part in helping ensure their communities are dementia friendly. See: Dementia 2013: The hidden voice of loneliness.

Alzheimer's Society (2012) Dementia 2012: a national challenge
The report, which presents new evidence from a survey and draws on existing research and current work, explores how well people are living with dementia in 2012 in England, Wales and Northern Ireland against seven outcomes identified by people with dementia and their carers as being important to them. The report highlights the achievements since the publication of the national strategy but shows that quality of life remains extremely varied. The Society calls for   “a major shift in societal awareness and understanding about dementia, and a move towards the development of dementia friendly communities”.

NHS Choices – Dementia
This website provides information on dementia covering: symptoms; causes; diagnosis; treatment; prevention and living with dementia.

NHS Choices (2011) Special report: Alzheimer’s in the news - fear and fascination
This report looks back at news stories on dementia and Alzheimer’s covered by the ‘Behind the headlines’ initiative which started in 2007 and identifies some of the most important stories and examines "those that were wide of the mark”.  The report looks at the media coverage of research studies and how accurately studies have been reported. It also aims to help readers judge future news reports for themselves.

Red and Yellow Care. A good life with dementia
This report identifies six ways to live a better life with dementia. By following a simple, six-point plan with the help of their carers, patients can overcome their fear of the disease and “make the most of what is potentially a long, rich and rewarding time of life”. The six tips include avoiding a “one size fits all” approach to the disease and, instead, looking at how to help patients maintain their personal identity. 

SCIE Dementia Gateway: About dementia
This section of the dementia gateway brings together information and resources about the symptoms and causes of dementia and different types of dementia. It includes modules on early stage and later stage dementia.

Welsh Assembly Government (2007) Dementia. How to reduce your risk 
This patient information leaflet provides advice on how to reduce the risk of getting dementia.

WHO and Alzheimer's Disease International (2012) Dementia: a public health priority
This report aims to raise awareness of dementia as a public health priority; to articulate a public health approach; and to advocate for action at international and national levels. 

See also Learning resources.

Raising awareness

Alzheimer's Society: Dementia Friends campaign
Dementia Friends is a national initiative that is being run by the Alzheimer's Society. It is funded by the government, aims to increase dementia awareness and change the way the nation thinks, talks and acts. The drive forms part of the six-month progress report on the Prime Minister's Challenge on Dementia. The Alzheimer's Society is working with volunteers and other organisations to achieve this goal. The initiative aims to create a network of a million Dementia Friends across England by 2015. Visit the Dementia Friends website.

Institute of Mental Health: Inside out of mind
Inside Out of Mind is an innovative project which has brought together ethnographic researchers with theatre practitioners to tackle the challenge of dementia care. The play portrays the experience of dementia care in hospitals and the role of health care assistants in particular, and is being used as a tool to support understanding of dementia. See also: Care settings - hospital care.

Purple Angel
By supporting Dementia Awareness Day (D.A.D.) and their sponsored charity, the Purple Angel campaign aims to raise awareness and to inspire and empower those who are living with dementia. This year, D.A.D. was celebrated on 21 September 2013. All funds raised throughout the year will be dedicated to Alzheimer's Research UK.