DementiaRoadmap

Helping primary care to support people with dementia

Understanding dementia

The word dementia describes a set of symptoms that may include memory loss and difficulties with thinking, problem-solving or language.

Dementia is caused when the brain is damaged by diseases, such as Alzheimer’s disease or a series of strokes or can be associated with other conditions such as Parkinson’s disease or Down’s syndrome.

Dementia is progressive, which means the symptoms will gradually get worse. Viewing dementia as a series of stages can be a useful way to understand the progression of the condition, while appreciating that each individual will experience dementia in a different way and the different dementia subtypes will have different symptoms.

The terms mild, moderate and severe are most often applied to Alzheimer’s disease although all subtypes can be defined as early or severe.

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Resources

  • Prime Minister’s Challenge on Dementia 2020 Implementation PlanMarch 6 2016This implementation plan outlines how the 50 commitments set out in the Prime Minister’s challenge on dementia 2020 will be met, ensuring that England becomes the world-leader in dementia care, research and awareness by 2020.
  • Women and Dementia: A global research overviewJune 5 2015This report published by Alzheimer’s Disease International explores the main issues affecting women in relation to dementia from an international perspective.
  • Younger people with dementiaMay 19 2015This factsheet published by the Alzheimer's Society explores at the types of dementia that younger people under 65 years of age may have, some of the difficulties that they might experience and where support can be found.
  • Dementia awareness resource packApril 10 2011This pack contains a selection of quality assured awareness raising resources designed to promote living well with dementia. The resources include leaflets, factsheets, contact lists and a DVD.
  • Are you worried about Dementia?April 7 2014This leaflet produced by the Lewy Body Society explains the main symptoms and causes of dementia. It also outlines the distinct symptoms associated with Lewy body dementia.
  • Dementia DiariesJune 4 2015Dementia Diaries is a national project that brings together people’s diverse experiences of living with dementia as a series of audio diaries.
  • Information about Lewy Body DementiaApril 27 2015This handbook published by the Lewy Body Society aims to help people with Lewy body dementia (LBD), their families and health care professionals learn more about the disease and find ways and resources to help them cope with it.
  • Moving and walking aboutJune 20 2012This Alzheimer's Society factsheet explains some of the reasons why a person with dementia may walk about and looks at what you can do to help.
  • Drugs used to relieve behavioural and psychological symptoms in dementiaJanuary 20 2012This factsheet produced by the Alzheimer’s Society explores the different types of drugs that can be used to treat these symptoms if non-pharmalogical treatments have not worked.
  • Award in Understanding DementiaMarch 18 2015The Alzheimer's Society and the Royal Society for Public Health have joined forces to create a new qualification to help people understand more about dementia.
  • What is dementia?April 2 2014This resource will help practitioners to understand that dementia is more than just difficulties with memory. Dementia is not a single disease but a term used to describe a group of symptoms.
  • Women’s experiences of dementiaJune 1 2015The 'Women's experiences of dementia' website contains a wealth of stories which highlight the experiences of women affected by dementia.
  • How common is dementia?April 6 2014According to the Alzheimer's Society there are around 800,000 people in the UK with dementia. One in three people over 65 will develop dementia, and two-thirds of people with dementia are women.
  • Improving Dementia Education and Awareness (IDEA)October 13 2013This online resource managed by the University of Nottingham is aimed at improving the care and quality of life for people with dementia.
  • Frontotemporal dementiaAugust 6 2013This article published in the British Medical Journal highlights some of the issues pertinent to Frontotemporal dementia, a clinically and pathologically heterogeneous group of non-Alzheimer dementias characterised collectively by relatively selective, progressive atrophy involving the frontal or temporal lobes, or both.
  • The Sound Doctor: Getting the best out of life with dementiaMarch 23 2015A series of films providing information to families living with dementia through the entertaining medium of TV/Film.
  • What causes dementia?April 6 2014Dementia is the result of brain cells being damaged in an ongoing way. This happens as a result of a number of different diseases (sometimes referred to as ‘types’ of dementia). It is not an inevitable part of ageing.
  • Dementia and aggressive behaviourMay 20 2013This factsheet produced by the Alzheimer's Society aims to aid understanding about what may cause this type of behaviour and offers some ways to deal with it.
  • Sight, perception and hallucinations in dementiaOctober 20 2012This Alzheimer's Society factsheet considers some specific difficulties that people with dementia can have with sight, perception and hallucinations, and suggests ways to support them.
  • What is vascular dementia?December 7 2011Vascular dementia is the second most common form of dementia after Alzheimer's disease. This Alzheimer's Society factsheet outlines the causes, symptoms and treatments available for vascular dementia.
  • What is Alzheimer’s disease?March 7 2012Alzheimer's disease is the most common cause of dementia, affecting around 496,000 people in the UK. This Alzheimer's Society factsheet outlines the symptoms and risk factors for Alzheimer's disease, and describes what treatments are currently available.
  • Dementia e-learning sessionsAugust 26 2013An interactive e-learning resource to support the training of all health and social care staff in recognising, assessing, and managing dementia, and providing high quality dementia care.
  • Ten tips for communicating with a person with dementiaSeptember 8 2012These top tips produced by the Family Caregiver Alliance will help practitioners and those caring for a person with dementia to improve communication skills and ability to handle the difficult behaviour.
  • What is dementia with Lewy bodies (DLB)?June 7 2013This Alzheimer's Society factsheet outlines the causes, symptoms and treatments available for Dementia with Lewy bodies (DLB).
  • Unusual behaviourNovember 29 2010This factsheet produced by the Alzheimer’s Society outlines some typical sorts of unusual behaviour in people with dementia and explains some common causes.
  • Services for younger people with Alzheimer’s disease and other dementiasMarch 18 2006This briefing paper jointly published by the Royal College of Psychiatrists and the Alzheimer's Society provides guidance on the services for younger people with Alzheimer’s disease and other dementias.
  • Understanding and respecting the person with dementiaNovember 29 2010This factsheet produced by the Alzheimer’s Society explores ways that carers can help people living with dementia to feel valued and good about themselves.
  • The later stages of dementiaMarch 7 2012During the later stages of dementia most people will become increasingly frail due to the progression of the illness. They will also gradually become dependent on others for all of their care.
  • Women and dementia: A marginalised majorityMarch 8 2015This report published by Alzheimer's Research UK reveals that dementia has become the leading cause of death among British women and that women are far more likely to end up as carers of those with dementia than men, suffering physical and emotional stress and job losses in the process.
  • Delivering major improvements in dementia care and research by 2015: A report of progressNovember 8 2012This report by the three Champion Groups leading the Prime Minister's challenge on dementia provides an update on progress since the launch of the Challenge in March 2012.
  • Listen, talk, connect: Communicating with people living with dementiaSeptember 5 2014This handbook published by Care UK is a guide to support carers relatives and friends who want to communicate effectively with someone living with dementia.
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Groups

  • Admiral Nursing DIRECTAdmiral Nursing DIRECT is a telephone and email helpline run by experienced Admiral Nurses for family and professional carers, people with dementia and those worried about their memory. 2nd Floor, Resource for London, 356 Holloway Road, London, N7 6PA0845 257 9406
  • Lewy Body SocietyThe Lewy Body Society is a charity which aims to raise awareness of Dementia with Lewy bodies for the general public and educate those in the medical profession and decision making positions about all aspects of the disease and to support research into the disease.Hudson House, 8 Albany Street, Edinburgh EH1 3QB, United Kingdom0131 473 2385
  • Innovations in DementiaInnovations in Dementia is a community interest company that works nationally with people with dementia, partner organisations and professionals to develop and test projects that will enhance the lives of people with dementia.PO Box 616, Exeter, EX1 9JB01392 420076
  • Dementia UKDementia UK is a national charity, committed to improving quality of life for all people affected by dementia. The charity provides Admiral Nurses, specialist dementia nurses who provide practical and emotional support to family carers of people with dementia.2nd Floor, Resource for London, 356 Holloway Road, London, N7 6PA020 7697 4160
  • Alzheimer’s SocietyAlzheimer's Society is a membership organisation, which works to improve the quality of life of people affected by dementia in England, Wales and Northern Ireland.Devon House, 58 St Katharine's Way, London, E1W 1LB020 7423 3500
  • Dementia Services Development CentreThe Dementia Services Development Centre is an international centre of knowledge and expertise dedicated to improving the lives of people with dementia.Iris Murdoch Building, University of Stirling, Stirling, FK9 4LA, Scotland01786 467740
  • Alzheimer’s Research UKAlzheimer's Research UK is a leading research charity for dementia, dedicated to funding scientific studies to find ways to treat, cure or prevent all dementias. 3 Riverside, Granta Park, Cambridge, CB21 6AD0300 111 5555
  • The Dementia Training CentreThe Dementia Training Centre offers a range of courses from face to face training programmes, tailored to the meet the needs of your organisation, free e-learning packages designed by experts, to a Master’s degree offering specialist dementia training.115 Denmark Hill, London, SE5 8AZ020 7848 0508
  • Dementia PathfindersDementia Pathfinders CIC is a social enterprise delivering therapeutic care and support for people with dementia and their families, and programmes of education and learning for people working in the dementia care field.Bushbury Triangle Resource Centre, 74 Stanley Road, Wolverhampton, WV10 9EL01902 556630