Dementia links
- Find out more about dementia
- Who’s doing research on dementia?
- Key dementia reports and policies
- Assistive technology and dementia
- Ethnicity and dementia
- Learning disabilities and dementia
- Younger people with dementia
- Resources for people with dementia
- Resources for carers
- Resources for professionals
- Housing and dementia
- Resources listed in featured topics
1. Find out more about dementia
Admiral Nursing DIRECT
The charity Dementia UK runs a telephone and email helpline for anyone affected by dementia, including professionals. The helpline is staffed by specialist mental health nurses, known as Admiral Nurses, who work to support the families and carers of people with dementia. The service offers information, practical advice and emotional support. You can contact the helpline by telephone or email.
Age UK
Age UK, the name for the newly joined Age Concern and Help the Aged, is England’s largest organisation working with and for older people. It provides information and advice on a vast range of topics, some of which relate to dementia, including care and support, end-of-life care, benefits and health. The telephone information helpline is open seven days a week, and you can download a range of information guides and factsheets for free, including for example: 1. How to find a care home and 2. Care home checklist.
Alzheimer’s Research Trust
The Alzheimer's Research Trust (ART) is the UK's largest research charity for dementia. ART’s website also provides information on dementia for the general public and professionals, for example information on causes, symptoms, and the treatments available.
Alzheimer’s Society
Alzheimer’s Society is the leading care and research charity campaigning for people with dementia and those who care for them. In addition to its network of local branches, the society also runs an information helpline, produces a wide range of publications (including over 80 free factsheets on all aspects of dementia), and hosts a range of web-based forums. The London headquarters of the Alzheimer’s Society hosts the Dementia Knowledge Centre, a library and information service for professionals and others with an interest in dementia care and research. Visitors are welcome by appointment.
Mental Health Foundation
The Mental Health Foundation (MHF) is a major UK charity that provides information, carries out research and campaigns and works to improve services for anyone affected by mental health problems. The website has a section, Mental Health A-Z, which includes information and a range of resources on dementia.
Milk’s in the oven
This 2005 (updated) version of a booklet by the Mental Health Foundation aims to explain dementia to children and young people, and has exercises that are suitable for use in a classroom situation.
NHS Choices
This NHS website provides information on dementia, knowing the symptoms, being diagnosed, getting treatment and living with dementia. The site also has an option to search for services related to memory problems and dementia in your locality.
Royal College of Psychiatrists (RCP)
The RCP has produced a collection of online leaflets for the general public that cover a range of topics related to older people’s mental health, including some dementia-specific resources: ‘Memory and dementia’, ‘Alzheimer’s disease and dementia’, and ‘Drug treatments for Alzheimer’s disease’.
Understanding dementia
This booklet is produced by Mind, a leading mental health charity in England and Wales. It is available as online web pages and you can also view it as a non-printable pdf file. Sections include information about what dementia is, what treatments are available, diagnosis and what help people with dementia need. The booklet lists information about useful organisations and further reading.
2. Who’s doing research on dementia?
Alzheimer’s Research Trust
The Alzheimer's Research Trust (ART) is the UK's largest research charity for dementia. It funds studies to find ways to treat, cure or prevent the range of dementias. ART brings together a network of 15 UK dementia research centres to share results and findings. It also provides information on dementia for the general public and professionals on its website, including for example, information on causes, symptoms, and the treatments available.
Alzheimer’s Society
The Alzheimer's Society funds research into the cause, cure, care and prevention of Alzheimer’s disease and other dementias conducted in leading scientific institutions across the UK. It works with people with dementia and carers to select the best dementia research projects for funding as part of the Quality Research in Dementia (QRD) network. The London headquarters of the Society also hosts the Dementia Knowledge Centre, which is a library and information service for professionals and others with an interest in dementia care and research.
Bradford Dementia Group
The Bradford Dementia Group (BDG) is a part of the University of Bradford and is often associated with the dementia pioneer, Tom Kitwood, who established the group in 1992. The multidisciplinary BDG conducts research in two key areas: the lived experience of dementia and quality of care (including dementia care mapping and innovative therapeutic interventions). BDG offers training and professional development courses in addition to its ongoing undergraduate and postgraduate programmes.
DeNDRoN
The Dementias and Neurodegenerative Diseases Research Network (DeNDRoN) was established in 2005 by the Department of Health. The network works to improve the quality, coordination and speed of new research, strengthen the involvement of people with dementia and their carers in research, and liaise with the healthcare industry to support the delivery of high quality trials across the UK.
EVIDEM
EVIDEM is the short name for ‘Evidence-based interventions in Dementia’, a five-year, £2 million programme of research funded by the National Institute for Health Research. EVIDEM is made up of five research projects run by a multidisciplinary group of researchers who are developing and testing evidence-based interventions, from diagnosis to end of life. The programme is hosted by Central and North West London NHS Foundation trust with academic input from a team of researchers at University College London, led by Professor Steve Iliffe, as well as a consortium of other academic contributors.
Housing and Dementia Research Consortium
This consortium is led by four major housing providers for older people: Housing 21, Anchor Trust, Hanover and the MHA. It works to develop the evidence base around housing with care options (or extra sheltered housing) for older people with dementia. Housing providers, researchers and interested individuals are welcome to join the consortium.
Dementia Services Development Centre
The Dementia Services Development Centre (DSDC) at the University of Stirling was the first DSDC to be established in the UK. As well as hosting events, producing publications, the DSDC also conducts research into dementia in order to improve the quality of life and services for people with dementia and their carers. One of the DSDC’s main areas of research over recent years has been dementia-friendly design.
3. Key dementia reports and policies
Dementia: supporting people with dementia and their carers in health and social care
This 2006 jointly published guideline by the National Institute for Health and Clinical Excellence (NICE) and the Social Care Institute for Excellence (SCIE) offers comprehensive best-practice advice on the care of people with dementia and on support for their carers.
Dementia UK
This 2007 report by the Alzheimer's Society provides the most up-to-date evaluation of the numbers of people with dementia in the UK, both current and projected.
Home from home: a report highlighting opportunities for improving standards of dementia in care homes
This 2007 report by the Alzheimer’s Society examined carers’ perceptions of the quality of dementia care provided in residential and nursing home facilities. It found problems with the provision of activities, a failure to treat residents with dementia with dignity and respect, poor relationships between care homes and relatives/friends, and variations in support available from external specialist services.
Improving services and support for people with dementia
This 2007 National Audit Office report reviewed services available for people with dementia. It criticised the quality and availability of care for people with dementia and their families.
Living well with dementia: a national dementia strategy
The Department of Health’s 2009 National Dementia Strategy for England is a landmark document which sets out the strategic framework within which local services can deliver quality improvements to dementia services in England. The strategy was developed in consultation with people with dementia and carers, as well as professionals, and sets out guidance for commissioning and implementing the strategy’s 17 recommendations.
Mental Capacity Act 2005
This legislation was implemented in England and Wales in two stages in April 2007 and October 2007. The Act and its associated Code of Practice have major implications for people with dementia, as do the Deprivation of Liberty Safeguards, a later amendment to the Act implemented in April 2009.
See me, not just the dementia: understanding people’s experiences of living in a care home
This 2008 publication by the Commission for Social Care Inspection (now the Care Quality Commission) reports on 100 inspections carried out in care homes across England using a new tool for inspecting: the Short Observation Framework for Inspection (SOFI). SOFI was developed in partnership with the University of Bradford and looks beyond the surface of routine care practice to understand the emotional wellbeing of people with dementia and how staff relate to them.
Improving dementia services in England: an interim report
This 2010 report from the National Audit Office (NAO) concludes that people with dementia are still not getting value for money with the services available to them, and that not enough is being done to ensure robust implementation of the National Dementia Strategy.
Dementia 2010
Here the Alzheimer’s Research Trust examines the numbers of people with dementia in the UK and calculates the economic cost of dementia to the UK economy. It argues that not enough is being spent on dementia research compared with conditions such as cancer and heart disease.
The use of antipsychotic medication for people with dementia: time for action
The Department of Health’s 2009 report suggests that at least two-thirds of the 180,000 people with dementia on antipsychotic medication do not need to be taking this medication, and in many cases it is actively harmful.
Counting the cost: caring for people with dementia on hospital wards
In this 2009 report, the Alzheimer’s Society produce research showing that people with dementia experience poor outcomes from hospital stays, and calls for nurses to be given training in dementia care.
4. Assistive technology and dementia
AT Dementia
This website brings together information about assistive technology that has the potential to support the independence and leisure opportunities of people with dementia. The site includes a searchable database of products and advice on how to obtain assistive technologies and telecare.
At home with AT (Assistive Technology): an evaluation of the practical and ethical implications of assistive technology and devices to support people with dementia and their carers
This 2004 project by Dementia Voice explored the potential of existing low-key devices that can be used to support people with dementia and their carers in their own homes. All aspects of choosing, installing, using and maintaining equipment that is currently available are investigated.
Disability Living Foundation
This is the largest charity providing free and independent advice about aids and assistive technology for people with disabilities, including people with dementia. The DLF produces information sheets, runs a telephone helpline, and maintains a website which includes a searchable database of products with descriptions and advice about how to obtain the item.
Telecare LIN
One of the Department of Health’s national Care Networks, the Telecare Learning and Improvement Network (LIN), supports the introduction of telecare and telehealth to housing, health and social care services for older and vulnerable people, including people with dementia. The network produces a regular newsletter, hosts events and also oversees the Telecare LIN website, which contains information about telecare, a service directory of telecare providers, case studies, performance information and reports.
The Telecare LIN published Dementia and telecare in 2008: a briefing addressing a range of issues including barriers, ethical and consent issues, and workforce issues for telecare and dementia.
5. Ethnicity and dementia
Assessment guide on dementia
This is a 2004 publication from the Policy Research Institute on Ageing and Ethnicity, which also conducted the CNEOPSA project (Care Needs of Ethnic Older People Suffering from Alzheimer’s) in the late 1990s.
Dementia, ethnicity and culture
This is a briefing on the findings of a seminar held by the Mental Health Foundation in 2003 to explore the research and service development challenges relating to ethnic minority elders with dementia.
Dementia UK
This report produced for the Alzheimer's Society in 2007 provides the most up-to-date evaluation of the numbers of people with dementia in the UK, both current and projected, including numbers of people with dementia from black and ethnic minority communities.
Serving the needs of marginalised groups in dementia care: younger people and minority ethnic groups
This 2002 research project involved the University of the West of England, Bristol and Dementia Voice, the Dementia Services Development Centre for South West England. The project’s report highlights the needs of marginalised groups in dementia care and recommends ways of responding to their needs appropriately and effectively.
The Mental Capacity Act: some implications for black and minority ethnic elders
This article addresses the implications of the Mental Capacity Act for older people from black and minority ethnic communities and first appeared in Age and Ageing in 2008 (vol 37, pp 242–243). You can view it online.
Psychiatric services for Black and minority ethnic older people
This 2009 report from the Royal College of Psychiatrists says that the process of developing and improving psychiatric services for black and minority ethnic older people has been slow, with only a few examples of good practice since the RCP previously reported on this in 2001. The report includes figures on prevalence and reports on studies into dementia awareness among black and minority ethnic communities.
6. Learning disabilities and dementia
Best practice in learning disability and dementia
This 2006 publication by the Edinburgh Centre for Research on Families and Relationships reports on a three-year research project that explored best practice for people with a learning disability who develop dementia. It also looked at what enables people to remain in their own homes and communities.
British Institute of Learning Disabilities
This national charity produces a range of publications on learning disabilities and dementia including ‘Down’s syndrome and dementia’ (for professionals), ‘About dementia’ (for people with learning disabilities) and ‘About my friend’ (for friends of people with Downs’s syndrome and dementia).
Do you recognise pain in someone with a learning difficulty and dementia?
This is a set of resources produced by the Joseph Rowntree Foundation in 2008 to help care staff, GPs and carers to recognise and treat pain in people who have a learning difficulty and dementia.
Home for good? Support for people with learning difficulties in residential settings who develop dementia
This 2004 report by the Joseph Rowntree Foundation explores the findings of a study that looked at the key issues relating to people with learning difficulties with dementia living in care home settings. The report includes some examples of best practice in care home provision.
Learning disabilities and dementia
This Alzheimer’s Society factsheet explains why people with learning disabilities are at risk of developing dementia and suggests tips for working with people with learning disabilities and dementia.
Supporting people with learning disability and dementia: a training resource pack for managers, team leaders and trainers
This 2009 pack, developed by the Stirling Dementia Services Development Centre and the Scottish Consortium for Learning Disabilities, contains a range of resources for managers and teams to work through to improve their knowledge of learning disabilities and dementia.
7. Younger people with dementia
Alzheimer’s Society
The Alzheimer’s Society has produced a number of resources on the issues arising for younger people with dementia, including a factsheet, a survey of current provision for younger people with dementia (2006), a reading list (2002) and a guide to service development and provision (2001). The Society also has a forum within the online community, Talking Point (for people with dementia and their carers) specifically for younger people with dementia.
CANDID (Counselling And Diagnosis In Dementia)
CANDID is a nurse-led information and advice service for younger people with dementia and their families. The CANDID telephone and email service is run by a consultant nurse and clinical nurse specialist and is available to patients and families registered with the NHS Specialist Cognitive Disorders clinic at the National Hospital, London, and associated healthcare professionals.
Dementia Web
This online information resource on dementia focuses on services in Oxfordshire, but also includes a section of valuable resources on general issues arising for younger people with dementia, including available benefits, employment and how to explain dementia to children and friends.
PSIGE: Faculty for Old Age Psychology, British Psychological Society
PSIGE is a forum for psychologists with an interest in work with older people, and its website includes a special interest area on younger people with dementia, which has information on the current state of services for younger people with dementia and links to relevant resources.
8. Resources for people with dementia
Alzheimer’s Forum
This is a weekly web magazine written by and for people with dementia from around the world. The forum offers people with dementia an opportunity to share thoughts and experiences, predicaments and tips.
Alzheimer's Society's Lesbian, Gay, Bisexual and Transgender (LGBT) support group
This telephone support service is for anyone who is lesbian, gay, bisexual or transgender and is affected by any form of dementia, either by having dementia or as carer of, or a former carer of, someone with dementia. Trained and skilled volunteers offer a listening ear to callers.
DASNI
DASN International is an internet-based support network established to provide a forum for people with dementia to exchange information and offer support and information to one another. DASNI members (a third of whom have dementia) are encouraged to participate in their own care and treatment, including making presentations at conferences, publishing books, giving interviews and writing articles on living with dementia.
Facing dementia
A Health Scotland 2008 publication written for people newly diagnosed with dementia. It covers topics such as ‘Staying well’, ‘Practical support’ and ‘Planning for the future’.
Living with Dementia Working Group
The Alzheimer’s Society coordinate the work of a Living with Dementia Working group, a group of people with dementia who are involved in many aspects of the Alzheimer’s Society’s work, including responding to consultations, making conference presentations and evaluating the effectiveness of information resources.
Scottish Dementia Working Group
The Scottish Dementia Working Group (SDWG) is an independent group run by people with dementia, and open to all people with dementia. The purpose of the SDWG is to campaign to improve services for, and attitudes towards, people with dementia.
Still going strong: a guide to dementia
This online booklet by the Mental Health Foundation is for people who want to find out more about living with dementia. It is particularly useful if you have recently been told you have dementia and want to know more about what this might mean. The material is presented as a series of ‘frequently asked questions’, and covers living with dementia, planning for the future and a section on strategies that people with dementia have found useful.
Talking point
Talking Point is an online community for people with dementia and their carers, family and friends to discuss all aspects of the condition. It is hosted by the Alzheimer’s Society and supported by a group of volunteer moderators. It includes a forum for people under the age of 65 who have dementia, and their carers, and a forum for gay and lesbian carers.
9. Resources for carers
Alzheimer's Society's Lesbian, Gay, Bisexual and Transgender (LGBT) Support group
This telephone support service is for anyone who is lesbian, gay, bisexual or transgender and is affected by any form of dementia, either by having dementia or as carer of, or a former carer of, someone with dementia. Trained and skilled volunteers offer a listening ear to callers.
Carers Direct
This NHS website offers information, advice and support for carers, including directing users to a national telephone helpline for carers, a search directory for carers’ services in your area, and a range of features on topics relevant to carers, for example, ‘Your wellbeing’ and ‘Work and study’.
Carers UK
Carers UK is the lead campaigning organisation for carers in the UK. This website has national and local information about services and support available to carers, and issues related to caring.
Dementia UK
The charity Dementia UK promotes and develops Admiral Nursing nationally. Admiral Nurses are specialist community nurses who focus on the needs of carers and families of people with dementia, but they are currently only available in limited parts of the UK (see Dementia UK's website to find out where). The charity runs a national telephone and email helpline, Admiral Nursing DIRECT, staffed by Admiral Nurses and available for anyone affected by dementia, including professionals.
Healthtalkonline
This website contains stories from 31 carers of people with dementia. Users can watch video, listen to audio recordings or read transcripts. The stories cover a wide range of areas including getting a diagnosis, becoming a carer and identifying signs of dementia. The stories were recorded as part of research into patient experiences led by experts at the University of Oxford.
Pick’s Disease Support Group
This UK-based support group provides information and support to carers. It meets several times a year, has an annual seminar and produces a newsletter. The group’s website contains resources including factsheets on Pick's disease, frontal lobe degeneration, dementia with Lewy bodies, Alzheimer's disease, primary progressive aphasia and other aspects of dementia such as unusual dementias.
Talking point
Talking Point is an online community for people with dementia and their carers, family and friends to discuss all aspects of the condition. It is hosted by the Alzheimer’s Society and supported by a group of volunteer moderators. It includes a forum for people under the age of 65 who have dementia, and their carers, and a forum for gay and lesbian carers.
Uniting Carers, Dementia UK
This national network run by the charity Dementia UK has more than 800 family carers, former carers, family members and friends. Uniting Carers works to give carers a voice in improving services for people with dementia by supporting carers to contribute to the training and education of professionals, taking part in research projects, campaigning for and being involved in consultations on service provision, speaking to the media, writing about experiences and fundraising.
Who cares? Information and support for the carers of people with dementia
This Department of Health publication (2007) is directed at carers of people with dementia and includes information about dementia, caring for someone with dementia and help available to carers.
10. Resources for professionals
Bradford Dementia Group Good Practice Guides
This series of evidence-based good practice guides, published by Jessica Kingsley Publishers, is aimed at anyone involved in the care of people with dementia. The series covers topics such as ‘Enriched care planning for people with dementia’, ‘Design for nature in dementia care’, and ‘Drug treatments and dementia’, among many others.
Change Agent Team
This Department of Health team produce a regular e-newsletter announcing reports, events and news related to many topics, including dementia, general older people’s mental health, commissioning, assistive technology, continuing care and personalisation.
Dementia Information Portal, Department of Health
This website has been developed following the implementation of the National Dementia Strategy and offers information and support to anyone with an interest in improving services for people with dementia. It includes news, case studies, discussions forums, podcasts and links to helpful resources.
Dementia: supporting people with dementia and their carers in health and social care
This 2006 jointly published guideline by the National Institute for Health and Clinical Excellence (NICE) and the Social Care Institute for Excellence (SCIE) offers comprehensive best-practice advice on the care of people with dementia and on support for their carers.
Dementia UK Training
Dementia UK Training specialises in the provision of high quality training courses for those who work with older people and people with dementia
Department of Health Care Networks
The Department of Health Care Networks website includes three microsites of particular interest to dementia care professionals: the Housing Learning Improvement Network (LIN), Telecare Learning Improvement Network (LIN) (see assistive technology resources), and Dementia Network. The Housing LIN site includes dedicated pages on ‘Housing and dementia’, which bring together information on all aspects of meeting the needs of people with dementia and their carers in housing settings – particularly, but not exclusively, extra care housing. The site includes information on commissioning, design, workforce and training issues, legislation and regulation, as well as featuring case studies about good practice in housing for people with dementia. The Dementia Network pages includes information related to the implementation of the National Dementia Strategy, including news, events listings, links to resources, and contact details for Department of Health regional dementia leads.
Links to the
Housing LIN Dementia pages
Telecare LIN
Dementia Network
Journal of Dementia Care
This multidisciplinary, bi-monthly journal is aimed at all professionals working with people with dementia. The subscription-only publication reports on news, research, resources and best-practice projects related to dementia care. The Journal also hosts the annual UK Dementia Congress in the autumn, an international conference bringing together over 500 people with dementia, carers and professionals, as well as approximately 10 conferences year throughout the UK for professionals on various dementia topics, such as technology and community care. The Journal is backed by Hawker Publications, which also publishes an extensive range of books on dementia.
Key principles of person-centred dementia care
This Statement of Best Practice by the National Care Forum specifies indicators of quality in relation to person-centred dementia care services.
Let’s Respect toolkit
Let’s Respect is an ongoing campaign led by the Department of Health to improve the care of older people with mental health problems, including dementia, in acute care settings. Let’s Respect has produced a free toolkit for professionals which includes information and training resources, case studies, photographs and posters. It continues to produce a regular newsletter for the Let’s Respect network.
Signpost: Journal of Dementia and Mental Health of Older People
This is a specialist quarterly journal aimed at professionals working with and caring for people with dementia, older people with mental health problems and their carers.
The Dementia Advocacy Network (DAN)
DAN is for people working in dementia advocacy: the network runs a forum to discuss issues and share ideas, provides training for new and experienced advocates and offers telephone support for advocates. DAN has a BME (black and minority ethnic) outreach worker who provides training to support advocacy schemes to be more inclusive and for those in the BME community on dementia advocacy.
The Stirling Dementia Services Development Centre (DSDC)
The DSDC at the University of Stirling in Scotland was the first DSDC to be established. It works to disseminate research and good practice about care for people with any type of dementia. The website gives details of DSDC education and training services, projects, information services and publications. The Stirling DSDC publishes the free monthly e-journal Dementia Now, which contains research information, web links, news stories and resources.
11. Housing and dementia
Housing LIN
The Housing LIN web-pages on Housing and Dementia have been developed to serve as a gateway to all matters relating to housing and dementia. They bring together information on all aspects of meeting the needs of people with dementia and their carers in housing settings – particularly, but not exclusively, extra care housing. These pages will be of interest to staff within health, social care, support and housing sectors.
12. Resources listed in featured topics
The five featured topics are:
Click on each one to look at the resources listed for that topic.
1. Getting to know the person with dementia
1.1 Understanding dementia
Alzheimer’s Society (2008) ‘The brain and behaviour’. Alzheimer’s Society factsheet 456. Available at www.alzheimers.org.uk/factsheet/456
Brooker, D. (2007) Person centred dementia care: making services better, London: Jessica Kingsley Publications.
Bryden, C. (2005) Dancing with dementia: my story of living positively with dementia, London: Jessica Kingsley Publications.
Kitwood, T. (1997) Dementia reconsidered: the person comes first, Buckingham: Open University Press.
1.2 Getting the conversation going
Alzheimer’s Society (2008) ‘Understanding and respecting the person with dementia’. Alzheimer’s Society factsheet 524. Available at www.alzheimers.org.uk/factsheet/524
Killick, J. and Allan, K. (2001) Communication and the care of people with dementia, Buckingham: Open University Press.
Perrin, T., May, H. and Anderson, E. (2008) Wellbeing in dementia; 2nd edition, Edinburgh: Churchill Livingstone.
Powell, J. (2000) Care to communicate: helping the older person with dementia, London: Hawker.
1.3 Getting to know me: touchstones of my life
Mitchell, R. (2007) Understanding the importance of life story work. Skill Starters Booklet 6. Stirling: Dementia Services Development Centre, University of Stirling.
Rio, R. (2009) Connecting through music with people with dementia: a guide for caregivers, London: Jessica Kingsley Publications.
Schweitzer, P. and Bruce, E. (2008) Remembering yesterday, caring today: reminiscence in dementia care. A guide to good practice, London: Jessica Kingsley Publications.
‘Switching on a light: an introduction to life story work’: a 2007 DVD developed by the Dementia Services Development Centre, University of Stirling, shows interviews with practitioners and people with dementia. An accompanying booklet explains how to get started on life story work and has a suggested outline for a training session. Both resources are available to purchase from the Dementia Services Development Centre, University of Stirling at www.dementiashop.co.uk
1.4 Communication in the later stages of dementia
Killick, J. and Allan, K. (2005) ‘Good Sunset Project: quality of life in advanced dementia’, Journal of Dementia Care, vol 13, no 6, pp 22–23.
Killick, J. and Allan, K. (2006) ‘Making contact with those close to death’, Journal of Dementia Care, vol 14, no 1, pp 22–24.
Killick, J, and Allan, K. (2006) ‘The Getting Through Initiative: inside the interactions’, Journal of Dementia Care, vol 14, no 2, pp 27–29.
www.dementiapositive.co.uk:
This is the website for two of the UK’s greatest advocates of communicating well with people with dementia: Kate Allan and John Killick. It contains lots of great ideas and resources. In particular go to ‘News’, and then ‘Communication projects’: this section presents information about the Good Sunset Project, which focused on communication with people with advanced dementia.
www.memorybridge.org/videos.php:
This website features an American documentary called ‘There is a bridge’, a wonderful film which features people with late-stage dementia developing emotionally meaningful relationships.
1.5 Exploring spiritual needs
Bryden, C. (2005) Dancing with dementia. London: Jessica Kingsley.
Flint, H. (2004) All God’s children: the spiritual needs of people with dementia. in Jones, G.M.M. and Miesen, B.M.L. (eds) Care-giving in dementia: research and applications, volume 3. Hove: Brunner-Routledge.
Jewell, A. (ed) (2004) Ageing, spirituality and well-being. London: Jessica Kingsley.
Killick J and Allan K 2001 Communication and care of people with dementia. Open University Press: Buckingham.
MacKinlay, E. (2006) Spiritual growth and care in the fourth age of life. London: Jessica Kingsley.
Shenk, D. (2001) The Forgetting. Alzheimer’s: portrait of an epidemic. New York: Anchor Books.
Shuman, Y. (1994) The power of a prayer shawl: exploring Jewish ritual objects. Reconstructionism Today. Summer.
Snyder, L. (2003) Satisfactions and challenges in spiritual faith and practice for persons with dementia. Dementia. vol 2, no 3, pp 299–313.
Stuckey, J.C. and Gwyther, L.P. (2003) Dementia, religion and spirituality. Dementia. vol 2, no 3, pp 291–297.
‘There is a Bridge’: documentary featuring Naomi Feil.
The BBC’s website has a comparative guide to different religions, including an interfaith calendar showing important dates in a wide range of religious traditions.
2. Eating well for people for dementia
2.1 Nutrition: why it is important for people with dementia
Alzheimer’s Society (2004) Eating and nutrition, Top tips for carers, and Finger food ideas. Food for thought leaflets. York: Alzheimer’s Society.
Alzheimer’s Society (2004) Care homes practice guide. Food for thought practice guides series. London: Alzheimer’s Society.
Alzheimer’s Society (2004) Domiciliary care practice guide. Food for thought practice guides series. London: Alzheimer’s Society.
British Association of Enteral and Parenteral Nutrition (BAPEN) (2003) Malnutrition Universal Screening Tool, Redditch: BAPEN. This is available to download for free from www.bapen.org.uk
Coleman, G. (2009) Alzheimer’s Society guide to catering for people with dementia, London: Alzheimer’s Society.
Marshall, M. (ed) (2003) Food glorious food: perspectives on food and dementia, London: Hawker.
‘Oh good lunch is coming’: This DVD was produced in 2002 by the Dementia Services Development Centre (DSDC), University of Stirling. The film is intended to help staff understand why people with dementia sometimes eat poorly and offers suggestions about what action to take and gives examples of good practice. Copies can be purchased via the DSDC website: www.dementiashop.co.uk
‘Tomorrow is another day’: This Alzheimer’s Society 2009 DVD is a basic awareness training in dementia care, covering a range of practical care issues. For more information, go to http://alzheimers.org.uk/site/scripts/retail_product_browse.php?product_id=44
2.2 Chewing and swallowing problems
Alzheimer’s Society (2004) Eating and nutrition, Top tips for carers, and Finger food ideas. Food for thought leaflets. York: Alzheimer’s Society.
Alzheimer’s Society (2004) Care homes practice guide. Food for thought practice guides series. London: Alzheimer’s Society.
Alzheimer’s Society (2004) Domiciliary care practice guide. Food for thought practice guides series. London: Alzheimer’s Society.
Coleman, G. (2009) Alzheimer’s Society guide to catering for people with dementia, London: Alzheimer’s Society.
Kindell, J. (2002) Feeding and swallowing disorders in dementia, Milton Keynes: Speechmark.
Marshall, M. (ed) (2003) Food glorious food: perspectives on food and dementia, London: Hawker.
‘Oh good lunch is coming’: This DVD was produced in 2002 by the Dementia Services Development Centre (DSDC), University of Stirling. The film is intended to help staff understand why people with dementia sometimes eat poorly and offers suggestions about what action to take and gives examples of good practice. Copies can be purchased via the DSDC website: www.dementiashop.co.uk
2.3 Promoting independence at mealtimes
Alzheimer’s Society (2004) Eating and nutrition, Top tips for carers, and Finger food ideas. Food for thought leaflets. York: Alzheimer’s Society.
Alzheimer’s Society (2004) Care homes practice guide. Food for thought practice guides series. London: Alzheimer’s Society.
Alzheimer’s Society (2004) Domiciliary care practice guide. Food for thought practice guides series. London: Alzheimer’s Society.
Coleman, G. (2009) Alzheimer’s Society guide to catering for people with dementia, London: Alzheimer’s Society.
Marshall, M. (ed) (2003) Food glorious food: perspectives on food and dementia, London: Hawker publications.
‘Tomorrow is another day’: This Alzheimer’s Society 2009 DVD is a basic awareness training in dementia care, covering a range of practical care issues. For more information, go to http://alzheimers.org.uk/site/scripts/retail_product_browse.php?product_id=44
2.4 The eating environment
Alzheimer’s Society (2004) Eating and nutrition; Top tips for carers; Finger food ideas. Food for thought leaflets. York: Alzheimer’s Society.
Alzheimer’s Society (2004) Care homes practice guide. Food for thought practice guides series. London: Alzheimer’s Society.
Alzheimer’s Society (2004) Domiciliary care practice guide. Food for thought practice guides series. London: Alzheimer’s Society.
Coleman, G. (2009) Alzheimer’s Society guide to catering for people with dementia, London: Alzheimer’s Society.
Crawley, H. (2002) Food, drink and dementia: how to help people with dementia eat and drink well, Stirling: Dementia Services Development Centre, University of Stirling.
Marshall, M. (ed) (2003) Food glorious food: perspectives on food and dementia, London: Hawker.
‘Oh good lunch is coming’: This DVD was produced in 2002 by the Dementia Services Development Centre (DSDC), University of Stirling. The film is intended to help staff understand why people with dementia sometimes eat poorly and offers suggestions about what action to take and gives examples of good practice. Copies can be purchased via the DSDC website: www.dementiashop.co.uk
Pool, J. (2006) The Alzheimer’s Society guide to the dementia care environment, London: Alzheimer’s Society.
‘Tomorrow is another day’: This Alzheimer’s Society 2009 DVD is a basic awareness training in dementia care, covering a range of practical care issues. For more information, go to http://alzheimers.org.uk/site/scripts/retail_product_browse.php?product_id=44
3. Difficult situations
3.1 Aggressive behaviour
Alzheimer’s Society (2008) ‘Dealing with aggressive behaviour’. Alzheimer’s Society factsheet 509. Available at www.alzheimers.org.uk/factsheet/509Stokes, G.(2008) And still the music plays: stories of people with dementia, London: Hawker.
Stokes, G.(2000) Challenging behaviour in dementia: a person-centred approach, Milton Keynes: Speechmark.
Goldsmith, M. (1996) ‘Challenging behaviour’ in Hearing the voice of people with dementia, London: Jessica Kingsley Publishers.
3.2 A different reality
Alzheimer’s Society (2009) ‘Hallucinations and delusions’. Alzheimer’s Society factsheet 520. Available at www.alzheimers.org.uk/factsheet/520
Bryden, C. (2005) Dancing with dementia, London: Jessica Kingsley Publishers.
Cheston, R. and Bender, M. (1999) ‘Therapeutic interventions’ in Understanding dementia, the man with the worried eyes, London: Jessica Kingsley Publishers.
‘Darkness in the afternoon’: a 2006 film and training booklet developed by the Dementia Services Development Centre, University of Stirling, intended to help staff and family carers explore some of the issues that can arise when a person with dementia has a different sense of reality. The DVD and training booklet are available to purchase from the Dementia Services Development Centre, University of Stirling at www.dementiashop.co.uk/?q=node/128
‘Ex memoria’: this 2006 award-winning fiction film tells the story of Eva, a woman with dementia living in a care home, who has a changing sense of reality. The film, which can be used for training purposes, was made in collaboration with the Bradford Dementia Group and is available to purchase as a DVD from www.exmemoriafilm.co.uk/
Stokes, G. (2002) ‘Confusion’, in G. Stokes and F. Goudie (eds) The essential dementia care handbook, Milton Keynes: Speechmark.
Walker, B. (2007) ‘Communication: building up a toolkit of helpful responses’, Journal of Dementia Care, vol 15, no 1, pp 28–33.
3.3 Problems related to using the toilet
Alzheimer Scotland (2003) ‘Continence management – advice for carers of people with dementia’. Alzheimer Scotland information sheet. Available at www.alzscot.org/pages/info/continence.htm
Alzheimer’s Society (2008) ‘Coping with incontinence’. Alzheimer’s Society factsheet 502. Available at www.alzheimers.org.uk/factsheet/502
Leslie, H. (2004) ‘Urinary continence rehabilitation in the person with dementia’, in M. Marshall (ed) Perspectives on rehabilitation and dementia, London: Jessica Kingsley Publishers.
Poole, J. (2007) The Alzheimer’s Society guide to the dementia care environment, London: The Alzheimer’s Society.
Stokes, G. (2002) ‘Responding to the need to toilet’, in G. Stokes and F. Goudie (eds) The essential dementia care handbook, Milton Keynes: Speechmark.
3.4 Repetition
Killick, J. and Allan, K. (2001) Communication and the care of people with dementia, Buckingham: Open University Press.
Murphy, C. (1994) It started with a sea-shell: life story work and people with dementia, Stirling: Dementia Services Development Centre, University of Stirling.
www.atdementia.org.uk: this website provides information on assistive technology products that can help with memory problems and other difficulties experienced by people with dementia
3.5 Walking
Alzheimer’s Society (2008) ‘Moving and walking about’. Alzheimer’s Society factsheet 501. Available at www.alzheimers.org.uk/factsheet/501
Kemshall, H. and Pritchard, J. (eds) (1996) Good practice in risk assessment and risk management 1, London: Jessica Kingsley Publishers.
Marshall, M. and Allan, K. (eds) (2006) Dementia: walking not wandering – fresh approaches to understanding and practice, London: Hawker.
3.6 Refusing help
Bryden, C. (2005) Dancing with dementia, London: Jessica Kingsley Publishers.
Stokes, G. (2008) And still the music plays: Stories of people with dementia, London: Hawker.
Stokes, G. (2000) Challenging behaviour in dementia: A person-centred approach, Milton Keynes: Speechmark.
Banerjee, S (2009) The use of antipsychotic medication for people with dementia: Time for action. A report for the Minister of State for Care Services. London: Department of Health.
4. Keeping active and occupied
4.1 Why activity matters
Counsel and Care (2007) Not only bingo: a study of good practice in providing recreation and leisure activities for older people in residential and nursing homes, London: Counsel and Care.
Hurtley, R. and Wenborn, J. (2005) The successful activity co-ordinator: a learning resource for activity and care staff engaged in developing an active care home, London: Age Concern Books.
Knocker, S. (2002) The Alzheimer’s Society book of activities, London: Alzheimer’s Society.
National Association for Providers of Activities for older people, Why activities are important, London: NAPA.
Perrin, T. (2005) The new culture of therapeutic activity with older people, Milton Keynes: Speechmark.
4.2 Activity as part of the whole day
Knocker, S. (2002) The Alzheimer’s Society book of activities, London: Alzheimer’s Society.
National Association for Providers of Activities for older people, Developing team spirit: activity, everybody’s job, London: NAPA.
National Association for Providers of Activities for older people, Activity allsorts, London: NAPA.
Sonas aPc:This organisation promotes structured group sessions which focus on sensory, social and cognitive stimulation for people with dementia, and trains care staff in how to run these sessions. Session leaders use a CD to guide the group through a familiar process incorporating introductions, songs, use of objects and so on – leaving them free to focus on communication with the individuals present (for more information, see www.sonasapc.ie).
4.3 Creative arts
Andersen-Warren, M. (1999) Creative groupwork with elderly people – drama, Milton Keynes: Speechmark.
Cotter, A., Fraser, F., Langford, S., Rose, L and Ruddock, V. (2001) Getting everybody included, London: Magic Me.
Craig, C.(2005) Focusing on the person: exploring the benefits of photography for people with dementia, Stirling: Dementia Services Development Centre, University of Stirling.
Craig, C.(2003) Meaningful making: a practice guide for occupational therapy staff, Stirling: Dementia Services Development Centre, University of Stirling.
Craig, C.(2001) Celebrating the person: activity pack, Stirling: Dementia Services Development Centre, University of Stirling.
Craig, C.(2001) Celebrating the person: a practical approach to art activities, Stirling: Dementia Services Development Centre, University of Stirling.
Innes, A. and Hatfield, K. (eds) (2001) Healing arts therapies and person-centred dementia care, London: Jessica Kingsley Publishers.
Killick, J. (2008) Dementia diary: poems and prose, London: Hawker.
Killick, J.(2000) Openings: dementia poems and photographs, London: Hawker.
Killick, J. (1997) You are words: dementia poems, London: Hawker.
Killick, J and Allan, K. (1999) ‘The arts in dementia care: touching the human spirit.’ Journal of Dementia Care, vol 7, no 5, pp 33-37
Langford, S. and Mayo, S. (2001) Sharing the experience: how to set up and run arts projects linking young and older people, London: Magic Me.
Speechmark (2000) ‘Let’s mime’. Milton Keynes: Speechmark. A simple charades game for two or more people of any age.
4.4 Movement and exercise
Circle dancing: www.circledanceindementia.com
Extend: www.extend.org.uk
Green Candle Dance Company: www.greencandledance.com
Jabadao dance and movement organisation: www.jabadao.org
Medau Movement: www.medau.org.uk
National Association for the Providers of Activities for Older People (2008) Breath of fresh air 2008 report, London: NAPA.
Oddy, R. (1998) Promoting mobility for people with dementia, London: Age Concern Books
‘Oh dear, what can the matter be’: This 2004 short film promotes the importance of moving and walking for people with dementia and was produced by the Dementia Services Development Centre (DSDC), University of Stirling. Copies can be purchased via the DSDC website: www.dementiashop.co.uk.
Postiloff Fisher, P. (1995) More than movement for fit to frail older adults: creative activities for the body, mind and spirit, Baltimore, Maryland: Health Professions Press.
Ruddlesden, M. (1995) You can do it – exercises for older people, London: Hawker.
Sobczak, J. (2001) Alive and kicking: exercises for the older adult, London: Age Concern Books.
Vitalyz chair based exercise training: http://www.vitalyz.co.uk/
4.5 Activity resources and approaches
Agar, K. (2008) How to make your care home fun: simple activities for people of all abilities, London: Jessica Kingsley Publishers.
Bell, V., Troxel, D., Cox, T. and Hamon, R.(2004 and 2007) The Best Friends book of Alzheimer’s activities, volumes 1 and 2. Baltimore, Maryland: Health Professions Press.
Dent, V. (2003) Group activities with older adults, Milton Keynes: Speechmark.
Hurtley, R. and Wenborn, J. (2005) The successful activity co-ordinator: a learning resource for activity and care staff engaged in developing an active care home, London: Age Concern Books.
James, I.A., Mackenzie, L. and Mukaetova-Ladinska, E. (2006) ‘Doll use in care homes for people with dementia’, International Journal of Geriatric Psychiatry, vol 21, no 11, pp 1093-98.
Knocker, S. (2002) The Alzheimer’s Society book of activities, London: Alzheimer’s Society.
Mackenzie, L., James, I.A., Morse, R. Mukaetova-Ladinska, E. and Reichelt, F.K. (2006) ‘A pilot study on the use of dolls for people with dementia’, Age and Ageing, vol 25, no 4, pp 441–44.
National Association for Providers of Activities for Older People. Activity allsorts (includes 101 things to do). London: NAPA.
Pool, J. (2007) The Pool Activity Level (PAL) Instrument for occupational profiling: a practical resource for carers of people with dementia (3rd edition), London: Jessica Kingsley Publishers.
Powell, J. (2007) Care to communicate: helping the older person with dementia (2nd edition), London: Hawker. This book includes the CLIPPER assessment tool with forms to photocopy.
Roe, P. (1998) Let’s talk, Milton Keynes: Speechmark. Discussion and prompt cards for use by groups in a range of settings.
Spector, A., Thorgrimsen, L., Woods, B. and Orrell M (2006) Making a difference: an evidence-based group programme to offer cognitive stimulation therapy to people with dementia, London: Hawker.
‘Tomorrow is another day’: This Alzheimer’s Society 2009 DVD is a basic awareness training in dementia care, covering a range of practical care issues. For more information, go to http://alzheimers.org.uk/site/scripts/retail_product_browse.php?product_id=44
4.5.1 Catalogues with activities resources
Jabadao
Tel: 0113 236 3311
www.jabadao.org
Catalogue has wide range of props for movement and dance work such as soft and scented balls, carnival sticks and elastic ropes.
The Consortium Care
Tel: 08453 66 88 22
www.theconsortiumcare.co.uk
Specific activities section with lots of practical resources.
Winslow Catalogue
Tel: 0845 230 2777
www.winslow-cat.com
Health and rehabilitation catalogue with specific dementia section and good range of games, group work and quiz books, and reminiscence products.
ROMPA
Tel: 0845 230 1177
www.rompa.com
Products for multisensory environments and leisure equipment.
Nottingham Rehab Supplies
Tel: 0845 120 4522
www.nrs-uk.co.uk
Over 3,500 daily living aids
Specialist Crafts Ltd
Tel: 0116 269 7711
www.speccrafts.co.uk
Art and craft catalogue.
TFH
Tel: 01299 827820
www.specialneedstoys.com/uk
Products for multisensory environments including sensory gardens.
Age Appropriate Resources
Tel: 01299 827820
www.specialneedstoys.com/ukaa
New World Music Ltd
Tel: 01986 891 600
www.newworldmusic.com/uk
A wide collection of new world music for general relaxation and sensory environments.
As Time Goes By
Tel: 0161 3706908
Collections of nostalgic music at reasonable prices.
4.6 Involving family and friends
Alzheimer Scotland (2003) Activities: a guide for carers of people with dementia. Edinburgh: Alzheimer Scotland. Available at [link to document here http://www.alzscot.org/downloads/activities.pdf ]
Alzheimer’s Society (2008) ‘Keeping active and staying involved’. Factsheet 505. Available from the Alzheimer’s Society website.
National Association for Providers of Activities for older people. Activity allsorts. London: NAPA. Go to www.napa-activities.co.uk for more information.
National Association for Providers of Activities for older people. ‘101 things to do when you are visiting’. London: NAPA. Go to www.napa-activities.co.uk for more information.
Pictures to Share books: These large, colourful hardback books are each based around a particular theme (for example, Women’s work and Beside the seaside). The books contain large photographs and very few words, and are intended to be a prompt for discussion and reflection. They have been developed specifically for and in consultation with people with dementia. Go to www.picturestoshare.co.uk for more information.
5. Environment
5.1 Kitchen and dining areas
Calkins, M.P. (1988) Design for dementia: planning environments for the elderly and the confused, Maryland: National Health Publishing.
Dementia Services Development Centre (2008) Design for people with dementia: audit tool, Stirling: Dementia Services Development Centre, Stirling University.
Pollock, R. (2003) Designing interiors for people with dementia, Stirling: Dementia Services Development Centre, Stirling University.
Watchman, K. (2007) Living with dementia: adapting the home of a person who has Down's syndrome and dementia. A guide for carers, Edinburgh: Down’s Syndrome Scotland.
5.2 Bedrooms
Brawley, E.C. (1997) Designing for Alzheimer's disease: strategies for creating better care environments, Chichester: John Wiley.
Dementia Services Development Centre (2008) Design for people with dementia: audit tool, Stirling:Dementia Services Development Centre, Stirling University.
Dementia Services Development Centre (2007) Best practice in design for people with dementia, Stirling:Dementia Services Development Centre, Stirling University.
Kerr, D., Wilkinson, H. and Cunningham, C. (2008) Supporting older people in care homes at night, York: Joseph Rowntree Foundation.
Pollock, R. (2003) Designing interiors for people with dementia, Stirling: Dementia Services Development Centre, Stirling University.
5.3 Toilets and bathrooms
Brawley, E.C. (1997) Designing for Alzheimer's disease: strategies for creating better care environments, Chichester: John Wiley.
Dementia Services Development Centre (2008) Design for people with dementia: audit tool, Stirling:Dementia Services Development Centre, Stirling University.
Dementia Services Development Centre (2007) Best practice in design for people with dementia, Stirling:Dementia Services Development Centre, Stirling University.
Pollock, R. (2003) Designing interiors for people with dementia, Stirling: Dementia Services Development Centre, Stirling University.
5.4 Gardens and outdoor spaces
Dementia Services Development Centre (2008) Design for people with dementia: audit tool, Stirling:Dementia Services Development Centre, Stirling University.
Dementia Services Development Centre (2007) Best practice in design for people with dementia, Stirling:Dementia Services Development Centre, Stirling University.
Pollock, A. (2001) Designing gardens for people with dementia, Stirling: Dementia Services Development Centre, Stirling University.
Rodiek, S. and Schwarz, R. (2008) Outdoor environments for people with dementia, New York: Routledge.
www.dementia.stir.ac.uk: Visit the website for the Dementia Services Development Centre, University of Stirling to see recommendations on planting.
5.5 Lighting
Dementia Services Development Centre (2008) Design for people with dementia: audit tool, Stirling:Dementia Services Development Centre, Stirling University.
Dementia Services Development Centre (2007) Best practice in design for people with dementia, Stirling:Dementia Services Development Centre, Stirling University.
Pollock, R., McNair, D., MacGuire, B. and Cunningham, C. (2008) Designing lighting for people with dementia, Stirling: Dementia Services Development Centre, Stirling University in association with the Institution of Lighting Engineers.
Royal National Institute of Blind People and Thomas Pocklington Trust (2008) Make the most of your sight: improve the lighting in your home, London: Royal National Institute of Blind People.
www.ile.org.uk: This is the website for the Institution of Lighting Engineers (ILE), the UK and Ireland’s largest professional lighting association. ILE provides information, events, training, exhibitions and a range of other resources, and could be a good first port of call for anyone interested in improving lighting in a care setting.
5.6 Assistive technology
Dementia Services Development Centre (2008) Design for people with dementia: audit tool, Stirling:Dementia Services Development Centre, Stirling University.
Dementia Services Development Centre (2007) Best practice in design for people with dementia, Stirling:Dementia Services Development Centre, Stirling University.
Dumfries and Galloway Council and NHS Dumfries and Galloway (2008) Smart ideas: aids and equipment to help to keep you safe and independent at home (PDF), Dumfries: NHS Dumfries and Galloway.
Taylor, F. (2009) Using electronic assistive technology to support people with dementia, Stirling: Dementia Services Development Centre, Stirling University.
www.atdementia.org.uk: This website provides information on assistive technology products that can help with memory problems and other difficulties experienced by people with dementia.
5.7 Creating a relaxing environment
Andrews, J. and House, A. (2009) Ten helpful hints for carers: practical solutions for carers living with people with dementia, Stirling: Dementia Services Development Centre.
NHS Health Scotland (2008) Facing dementia: how to live well with your diagnosis, Edinburgh: NHS Health Scotland.
6. Making decisions
6.1 Helping people make their own decisions
Alzheimer’s Society (2010) My name is not dementia. London:Alzheimers Society.
Alzheimer’s Society and Jackie Pool Associates (2009) Supporting people with dementia using the MCA. London: Alzheimer’s Society.
Department for Constitutional Affairs (2007) The Mental Capacity Act 2005 Code of Practice (PDF). London: The Stationery Office.
Office of the Public Guardian (2009) Making decisions: A guide for people who work in health and social care (PDF). London: OPG.
SCIE Mental Capacity Act Resource. This web-based hub contains extensive information about the Mental Capacity Act, including introductory materials, training and specialist resources, audit tools, and links to research reports and short films about mental capacity.
SCIE (2009) ‘Getting to know the person with dementia’ section on the SCIE Dementia Gateway.
Social Care TV (2009). ‘Raymond’s Money’.
6.2 Capacity: Can the person make the decision?
Assessment of Mental Capacity Audit Tool (AMCAT): this simple online tool is designed to help staff and others evaluate, reflect and learn about an assessment of mental capacity they have done. The tool is part of a website hosted by the Mental Health Foundation, which includes information, case studies and resource links related to capacity.
Department for Constitutional Affairs (2007) The Mental Capacity Act 2005 Code of Practice (PDF). London: The Stationery Office.
Department of Health (2009) Reference guide to consent for examination or treatment (2nd ed). London: Department of Health.
Letts, P. (ed) (2009) Assessment of mental capacity: A practical guide for doctors and lawyers (3rd ed). London: The British Medical Association and the Law Society.
SCIE (2009) At a glance 5: Mental Capacity Act. London: SCIE.
SCIE Mental Capacity Act Resource. This web-based hub contains extensive information about the Mental Capacity Act, including introductory materials, training and specialist resources, audit tools, and links to research reports and short films about mental capacity.
6.3 Making decisions in a person’s best interests
Alzheimer’s Society (2010) My name is not dementia. London:Alzheimers Society.
Alzheimer’s Society and Jackie Pool Associates (2009) Supporting people with dementia using the MCA. London: Alzheimer’s Society.
Department for Constitutional Affairs (2007) The Mental Capacity Act 2005 Code of Practice (PDF). London: The Stationery Office.
Office of the Public Guardian (2009) Making decisions: A guide for people who work in health and social care. London: OPG.
Ministry of Justice (2008) Mental Capacity Act 2005: Deprivation of Liberty Safeguards Code of Practice (PDF). London: The Stationery Office.
SCIE Mental Capacity Act Resource. This web-based hub contains extensive information about the Mental Capacity Act, including introductory materials, training and specialist resources, audit tools, and links to research reports and short films about mental capacity.
6.4 Advance care planning
Advance decisions to refuse treatment (ADRT) website. This NHS website explains how the law allows people to make decisions to refuse treatments and has links to key resources.
NHS National End of Life Care Programme (2009) ‘Advance care planning’. Web-based information and links to other resources on advance care planning.
Office of the Public Guardian (2010) ‘Making a Lasting Power of Attorney’. Web-based information.
SCIE Mental Capacity Act Resource. This web-based hub contains extensive information about the Mental Capacity Act, including introductory materials, training and specialist resources, audit tools, and links to research reports and short films about mental capacity.
7. End of life care
7.1 Introduction
Alzheimer Europe Report (2008) Guidelines on good end of life care for people with dementia. Luxembourg: Alzheimer Europe.
Hockley, J. and Clark, D. (2002) Palliative care for older people in care homes. Buckingham: Open University Press.
Hughes J (ed) (2006) Palliative care in severe dementia. London: Quay Book.
Liverpool Care Pathway for the Dying Patient.
NCPC (2010) The power of partnerships. London: National Council for Palliative Care.
NCPC (2009) Out of the shadows: End of life care for people with dementia. London: National Council for Palliative Care.
NCPC (2008) Creative partnerships: Improving quality of end of life care for people with dementia. London: National Council for Palliative Care.
NCPC (2007) Progress with dementia – moving forward: Addressing palliative care for people with dementia. London: National Council for Palliative Care.
NCPC (2005) Exploring palliative care for people with dementia. London: National Council for Palliative Care.
7.2 Pain in advanced dementia
Abbey Pain Tool. visit the website for a copy of the Abbey Pain Tool.
About.com website (2006) ‘Assessing pain in dementia’.
International Association for the Study of Pain Subcommittee on Taxonomy. (1979). Pain terms: A list with definitions and notes on usage. International Association for the Study of Pain Subcommittee on Taxonomy, vol 6, no 3, pp 249–52.
North West Dementia Centre (2005) Pain in dementia: factsheet (PDF). Manchester: NWDC.
7.3 Eating and drinking at the end of life
Family Practice Notebook website (2010) Nutrition in advanced dementia: Dementia related malnutrition.
Marie Curie, NHS Haringey, Barnet, Enfield and Haringey NHS Mental Health Trust, Haringey Council, for dementia and The National Council for Palliative Care (2009) End of life care for people with dementia. London: Marie Curie. Available at http://eolc.cbcl.co.uk/eolc/smariec.htm
Partridge, R. and Campbell, C. (2007) Artificial nutrition and hydration: Guidance in end of life care for adults. A joint publication between National Council for Palliative Care and The Association of Palliative Medicine. London:
7.4 Carers’ needs
Admiral Nurses are specialist dementia nurses who work in the community with families affected by dementia. Admiral Nursing DIRECT is a telephone information and support line for people with dementia, family carers and professionals run by experienced Admiral Nurses. Contact Admiral Nursing DIRECT on 0845 257 9406 or email direct@dementiauk.org
Cruse Bereavement Care: this national charity run a telephone and email helpline for bereaved people on 0844 477 9400.
Whitman, L (ed) (2009) Telling tales about dementia: Experiences of caring. Jessica Kingsley, London.
7.5 Care in the last days and hours of life
Liverpool Care Pathway for the Dying Patient.
Mitchell, S.L., Kiely, D.K. and Hamel, M.B. (2004) ‘Dying with advanced dementia in the nursing home’, Archives of Internal Medicine, vol 164, pp 321–26.
Mitchell, S.L., Morris, J.N., Park, P.S. and Fries, B.E. (2004) ‘Terminal care for persons with advanced dementia in the nursing home and home care settings’, Journal of Palliative Medicine, vol 7, no 6, pp 808–16.
NCPC (2009) Out of the shadows: End of life care for people with dementia. London: National Council for Palliative Care.
Watson, M. and Lucas, C. (2003) Adult palliative care guidelines. London: The South West London and The Surrey, West Sussex and Hampshire (SWSH) Cancer Networks.
Charity No. 1092778, Company Reg. No. 4289790. Goldings House, 2 Hay's Lane, London SE1 2HB