Dementia Gateway: Resources for specific topics

Click on a heading to see the resources listed for that topic.

• Early signs and diagnosisOpen

  Early signs of dementia

  • Alzheimer's Disease International. 'Early symptoms'
  • Alzheimer's Society. 'The progression of Alzheimer's disease and other dementias' Factsheet 458
  • Alzheimer's Society: 'Worried about your memory' campaign
  • Healthtalkonline website: This website contains stories from 31 carers of people with dementia, some presented in videos, some in audio recordings. The stories cover a wide range of areas, including recognising the early signs of dementia and getting a diagnosis. The stories were recorded as part of research into patient experiences led by experts at the University of Oxford.
  • NHS Choices website: 'Living with dementia' video - This features two carers describing the process leading up to and including diagnosis, and Professor Sube Banerjee explaining the importance of getting an early diagnosis.

  Dementia risk factors

  • Alzheimer's Research Trust (2010. 'Dementia 2010'. Cambridge: ART.
  • Alzheimer's Society. Am I at risk of developing dementia? Factsheet 450
  • Alzheimer's Society. Genetics and dementia' Factsheet 405
  • Alzheimer's Society. Younger people with dementia Factsheet 440
  • Alzheimer's Society website. Statistics
  • BBC website. Your guide to reducing the risk of dementia
  • McCullagh, CD., Craig, D., McIlroy, S.P. and Passmore, A.P. (2001) Risk factors for dementia, Advances in Psychiatric Treatment, vol 7, pp 24-31
  • NHS Choices website. Preventing dementia

  What else could it be?

  • Alzheimer's Society. Depression Factsheet 444
  • Counsel and Care (2010) Memory loss, depression, 'confusion' and dementia. Guide 9. London: Counsel and Care.
  • NHS Choices website: this website contains a wide range of information, some of which relates to conditions that can be mistaken for dementia. See for example, Urinary tract infections (UTIs) , Alcohol risks for over-60s, Clinical depression: Lawrence's story and Mental health at 60-plus
  • National Institute of Neurological Disorders and Stroke website. What conditions are not dementia?

  Why early diagnosis is important

  • Alzheimer's Disease International (2011) World Alzheimer Report 2011: The benefits of early diagnosis and intervention. London: ADI.
  • Alzheimer's Research UK (2011) 'Alzheimer's Research UK launches as public dementia fears spiral'. Press release February 9, 2011.
  • Alzheimer's Society. After a diagnosis. Factsheet 471
  • Alzheimer's Society. 'Getting diagnosed with dementia'. Watch this film telling the story of Christine, who was diagnosed with Alzheimer's disease, and her daughter Jennifer-Rose. The pair discuss the impact that a delayed diagnosis had on their lives, and how important it was for Christine to stay in work after the diagnosis. Available to view at on YouTube
  • Alzheimer's Society. Living alone. Factsheet 517
  • Alzheimer's Society: The society's Worried about your memory campaign has run since 2008. It aims to raise awareness about dementia and encourage people who are worried about their memory to seek help from their GP. The campaign comes with a leaflet, translated into 13 languages, giving examples of early signs of dementia and a video promoting the need to recognise early signs and take action.
  • Healthtalkonline website: This website contains stories from 31 carers of people with dementia, some presented in videos, some in audio recordings. The stories cover a wide range of areas, including recognising the early signs of dementia and getting a diagnosis. The stories were recorded as part of research into patient experiences led by experts at the University of Oxford.
  • Norms talking about the benefits of an early diagnosis of dementia is available on YouTube

  Getting a diagnosis

  • Alzheimer's Society: The society's Worried about your memory campaign has run since 2008. It aims to raise awareness about dementia and encourage people who are worried about their memory to seek help from their GP. The campaign comes with a leaflet, translated into 13 languages, giving examples of early signs of dementia and a video promoting the need to recognise early signs and take action.
  • Alzheimer's Society. Diagnosis and assessment Factsheet 426
  • Alzheimer's Society. How health and social care professionals can help Factsheet 454
  • Alzheimer's Society. The Mini Mental State Examination (MMSE) Factsheet 436
  • Alzheimer's Society. What is a dementia adviser? information sheet
  • Alzheimer's Society (2012) Increase in number of people diagnosed with dementia: over 400,000 remain undiagnosed, according to Alzheimer's Society. Alzheimer's Society press release. 22 February 2012.
  • Healthtalkonline website: This website contains stories from 31 carers of people with dementia, some presented in videos, some in audio recordings. The stories cover a wide range of areas, including recognising the early signs of dementia and getting a diagnosis. The stories were recorded as part of research into patient experiences led by experts at the University of Oxford.
  • Mitchell, A.J., Meader, N. and Pentzek, M. (2011) 'Clinical recognition of dementia and cognitive impairment in primary care: a meta-analysis of physician accuracy', Acta Psychiatrica Scandinavica, vol 125, issue 3, pp 165-83.
  • NHS Choices website: Diagnosing dementia
  • University of Leicester press office (2011) GPs missing early dementia: new study. University of Leicester press release, 20 June 2011.

• Getting to know the person with dementiaOpen

  • Alzheimer's Society (2008) 'The brain and behaviour' (PDF). Alzheimer's Society 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.

  Getting the conversation going

  • Alzheimer's Society (2008) 'Understanding and respecting the person with dementia' (PDF). Alzheimer's Society 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.

  Getting to know me: touchstones of my life

  • Mitchell, R. (2007) 'Understanding the importance of life story work'. Skill Starters Booklet 6. 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.

  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.
  • Dementia Positive: 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.
  • 'There is a bridge' DVD: Dementia expert Naomi Feil talks with Gladys Wilson, a woman with advanced dementia, and shows that even people who seem to be very withdrawn can still be reached. An extract from the DVD is available on YouTube.

  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' DVD: Dementia expert Naomi Feil talks with Gladys Wilson, a woman with advanced dementia, and shows that even people who seem to be very withdrawn can still be reached. An extract from the DVD is available on YouTube
  • 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.

• Difficult situationsOpen

  Aggressive behaviour

  • Alzheimer's Society (2008) 'Dealing with aggressive behaviour'. Alzheimer's Society factsheet 509.
  • 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.
  • Goldsmith, M. (1996) 'Challenging behaviour' in 'Hearing the voice of people with dementia', London: Jessica Kingsley Publishers.

  A different reality

  • Alzheimer's Society (2010) 'Hallucinations in people with dementia'. Alzheimer's Society 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 the Dementia Shop.
  • '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 the website/
  • 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.

  Problems related to using the toilet

  • Alzheimer Scotland (2003) 'Continence management – advice for carers of people with dementia'. Alzheimer Scotland information sheet.
  • Alzheimer's Society (2008) 'Coping with incontinence'. Alzheimer's Society 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.

  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' Dementia Services Development Centre, University of Stirling.
  • At Dementia: this website provides information on assistive technology products that can help with memory problems and other difficulties experienced by people with dementia

  Walking

  • Alzheimer's Society (2008) 'Moving and walking about'. Alzheimer's Society 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.

  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.

  Sexual expression

  • Alzheimer Scotland (2003) 'Sexuality and dementia'. Alzheimer Scotland information sheet.
  • Alzheimer's Society (2010) 'Sex and dementia'. Factsheet 514.
  • Archibald, C. (2005)' Sexuality and dementia: A guide for all staff working with people with dementia. ' Dementia Services Development Centre, University of Stirling.
  • Bouman, W.P. (2008) 'Sexuality in later life', in R. Jacoby and C. Oppenheimer (eds) 'Oxford'' textbook of old age psychiatry'Oxford: Oxford University Press.
  • HM Government (2005) 'Mental Capacity Act'. London: The Stationery Office.
  • Janes, E. and Shirley, L. (2008) 'Acknowledging the man, not the behaviour'' Journal of Dementia Care', vol 16, no 1, pp 20–24.
  • Knocker, S. (2006) The whole of me: Meeting the needs of older lesbians, gay men and bisexuals living in care homes and extra care housing. A resource pack for professionals. London: Age Concern.

  Being withdrawn

  • Alzheimer's Society (2007) 'Home from home: Quality of care for people with dementia living in care homes.' London: Alzheimer's Society.
  • Commission for Social Care Inspection (2008) 'See me, not just the dementia', London: Commission for Social Care Inspection.
  • Department of Health (2009) 'The use of antipsychotic medication for people with dementia: time for action', an independent report by Professor Sube Banerjee. London: Department of Health.
  • Killick, J. (2007) 'You are words' London: Hawker.
  • 'There is a bridge' DVD: Dementia expert Naomi Feil talks with Gladys Wilson, a woman with advanced dementia, and shows that even people who seem to be very withdrawn can still be reached. An extract from the DVD is available on YouTube.

• Eating well for people for dementiaOpen

  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) 'D''omiciliary 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.
  • 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.
  • Alzheimer's Society (2010) 'Food for thought: finger food ideas'. Alzheimer's Society leaflet. London: Alzheimer's Society.

  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) 'D''omiciliary 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.
  • Alzheimer's Society (2010) 'Food for thought: finger food ideas'. Alzheimer's Society leaflet. London: Alzheimer's Society.

  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) 'D''omiciliary 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.
  • Alzheimer's Society (2010) 'Food for thought: finger food ideas'. Alzheimer's Society leaflet. London: Alzheimer's Society.

  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) 'D''omiciliary 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' : Dementia Services Development Centre, University of Stirling.
  • Marshall, M. (ed) (2003) 'Food glorious food: perspectives on food and dementia' London: Hawker.
  • Pool, J. (2006) 'The Alzheimer's Society guide to the dementia care environment' London: Alzheimer's Society.

  Diet, super foods and dementia

  • Coleman, G. (2009). 'Alzheimer's Society's guide to catering for people with dementia'. York: Alzheimer's Society.
  • Doyle, P. and Deane, A. (2009) 'Top 100 omega 3 recipes: Reduce your risk of heart disease, keep your brain active and agile', London: Duncan Baird Publishers.
  • The NHS Choices website has information on 'Healthy eating' for a range of different age groups.
  • Heart Protection Study Collaborative Group (HPSCG) (2002) 'MRC/BHF Heart Protection Study of antioxidant vitamin supplementation in 20536 high risk individuals: a randomised placebo-controlled trial''The Lancet', vol 360, pp 23-33.
  • Mental Health Foundation website. 'Feeding minds'. This web guide indicates what foods may help to manage mental wellbeing.
  • Skoog, I., Nilsson, L., Persson, G., Lernfelt, B., Landahl, S., Palmertz, B. Andreasson, L-A., Oden, A. and Svanborg, A. (1996) '15-year longitudinal study of blood pressure and dementia''The Lancet', vol 347, pp 1141-45.

  Eating well at home

  • Alzheimer's Society (2010) 'Food for thought: finger food ideas'. Alzheimer's Society leaflet. London: Alzheimer's Society.
  • Coleman, G. (2009) 'Alzheimer's Society's guide to catering for people with dementia'. York: Alzheimer's Society.
  • 'Delirium': this web page includes information, resources and links on delirium. It was developed by the Let's Respect project and is available on the National Mental Health Development Unit website.

• Keeping active and occupiedOpen

  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.

  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.

  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' Dementia Services Development Centre, University of Stirling.
  • Craig, C.(2003) 'Meaningful making: a practice guide for occupational therapy staff': Dementia Services Development Centre, University of Stirling.
  • Craig, C.(2001) 'Celebrating the person: activity pack' Dementia Services Development Centre, University of Stirling.
  • Craig, C.(2001) 'Celebrating the person: a practical approach to art activities', 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.

  Movement and exercise

  • Circle dancing
  • Extend
  • Green Candle Dance Company.
  • Jabadao dance and movement organisation.
  • Medau Movement.
  • 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.
  • 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

  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.

  Catalogues with activities resources

  • Jabadao (Tel: 0113 236 3311) - 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) - Specific activities section with lots of practical resources.
  • Winslow Catalogue (Tel: 0845 230 2777) - 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) - Products for multisensory environments and leisure equipment.
  • Nottingham Rehab Supplies (Tel: 0845 120 4522) - Over 3,500 daily living aids.
  • Specialist Crafts Ltd (Tel: 0116 269 7711) - Art and craft catalogue.
  • TFH (Tel: 01299 827820) - Products for multisensory environments including sensory gardens.
  • Age Appropriate Resources(Tel: 01299 827820)
  • New World Music Ltd (Tel: 01986 891 600) - 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.

  Involving family and friends

  • Alzheimer Scotland (2003) 'Activities: a guide for carers of people with dementia' (PDF). Edinburgh: Alzheimer Scotland.
  • 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.
  • National Association for Providers of Activities for older people. '101 things to do when you are visiting'. London: NAPA.
  • 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 for more information.

  Activity in the later stages

  • Clarke, R. (2004) 'Precious experiences beyond words''Journal of Dementia Care', vol 12, no 3, pp 22–23.
  • Heywood, B. (1994) 'Caring for Maria', Tisbury: Element Books'.'
  • Knocker, S. (2006) ''Activities in the later stages of dementia' in the Alzheimer's Society Book of Activities', London: Alzheimer's Society.
  • Koenig Coste, J. (2003) 'Learning to speak Alzheimer's', London: Vermilion'. '
  • Lidzey, A. (2004). 'Coma work: a new approach to withdrawn states''Journal of Dementia Care', vol 12, no 3, pp 20–21.
  • Zeisel, J. (2010)' I'm still here: a breakthrough approach to understanding someone living with Alzheimer's', London: Piatkus.
  • Zoutwelle-Morris, S. (2010) 'Creative interaction with people in advanced dementia''Journal of Dementia Care', 18(1) pp 20–22.

  Developing community links

  • Langford, S. and Mayo, S. (2001) 'Sharing the experience'. London: Magic Me.
  • NAPA (2010) 'Activity at the heart of care: a guide to developing community links'. London: NAPA.
  • NAPA (2010) 'A guide for volunteers and visitors'. London: NAPA.

  Culture and religion

  • Barrow, M. (2010) 'Multifaith calendar'. Woodlands website. The Woodlands Junior School in Kent provides a good calendar of important religious dates across the year.
  • A summary of all major religions and facts about them.
  • 'Looking at culture and dementia'(PDF): This module from Stanford Ethnogeriatrics Curriculum in the United States explores some of the issues to think about and offers good practice pointers.
  • Moving Here: This website is hosted by The National Archives and allows users to look at vast amounts of valuable archival material related to immigration to England. It also invites users to contribute their own stories of moving to England from other parts of the world, and includes stories from older people from many different places.
  • Moriarty, J., Sharif, N. and Robinson, J. (2011) 'Black and minority ethnic people with dementia and their access to support and services' (PDF). SCIE Research briefing 35. London: SCIE.

• Making decisionsOpen

  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'.
  • Department of Health (2010) 'Nothing ventured, nothing gained: risk guidance for people with dementia' (PDF). London: Department of Health.

  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.
  • Department of Health (2010) 'Nothing ventured, nothing gained: risk guidance for people with dementia' (PDF). London: Department of Health.

  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.

  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 (2011) 'Capacity, care planning and advance care planning in life limiting illness: a guide for health and social care staff'. Web-based information and links to other resources on advance care planning.
  • The Directgov website contains information on 'Making and registering a Lasting Power of Attorney'.
  • 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.
  • Department of Health (2010) 'Nothing ventured, nothing gained: risk guidance for people with dementia' (PDF). London: Department of Health.
  • National Council for Palliative Care/Dying Matters Coalition (2011) 'Difficult conversations: making it easier to talk to people with dementia about the end of life' London: NCPC. Available to download from NCPC website for a charge

• EnvironmentOpen

  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', Dementia Services Development Centre, Stirling University.
  • Pollock, R. (2003) 'Designing interiors for people with dementia', 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.

  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'Dementia Services Development Centre, Stirling University.
  • Dementia Services Development Centre (2007) 'Best practice in design for people with dementia', 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', Dementia Services Development Centre, Stirling University.

  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.

  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.

  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.
  • 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.

  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.
  • SCIE Social Care Institute for Excellence (2010) 'Ethical issues in the use of telecare'. At a glance 24. London: SCIE.
  • Taylor, F. (2009) 'Using electronic assistive technology to support people with dementia', Stirling: Dementia Services Development Centre, Stirling University.
  • At Dementia: This website provides information on assistive technology products that can help with memory problems and other difficulties experienced by people with dementia.
  • Alzheimer's Society (2011) 'Assistive technology'. Position paper. London: Alzheimer's Society.
  • Foundation for Assistive Technology, Innovations in Dementia and Trent Dementia Services Development Centre (2011) 'Getting equipped to tackle forgetfulness: Top tips for family and friends. Equipment, gadgets and technology to help people with dementia.'

  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.

  Learning disabilities and dementia

  • Cooper, S. (1997) High prevalence of dementia among people with learning disabilities not attributable to Down's syndrome. 'Psychological Medicine', vol 27, no 3, pp 609–16.
  • Dodd, K., Kerr, D. and Fern, S. (2006) 'Down's syndrome and dementia: Workbook for staff', Teddington, Middlesex: Down's Syndrome Association.
  • Earnshaw, K. and Donnelly, V. (2001) 'Partnerships in practice''Learning Disability Practice', vol 4, no 3, p 27.
  • Fray, M. (2000) 'Caring for Kathleen: a sister's story about Down's syndrome and dementia', Worcester: BILD Publications.
  • Watchman, K. Kerr, D. and Wilkinson, H. (2010) 'Supporting Derek: A new resource for staff working with people who have a learning difficulty and dementia'. York: Joseph Rowntree Foundation.
  • Kerr, D. (2007) 'Understanding learning disability and dementia: Developing effective interventions', London: Jessica Kingsley.
  • Lai, F. and Williams, R.S. (1989) 'A prospective study of Alzheimer's disease in Down's syndrome''Archives of Neurology', vol 46, pp 849–53.
  • Prasher, V. (1995) Age-specific prevalence: thyroid dysfunction and depressive symptomology in adults with Down's syndrome and dementia. 'International Journal of Geriatric Psychiatry', vol 10, pp 25–31.
  • Watchman, K. (2007) 'Living with dementia: adapting the home of a person who has Down's syndrome and dementia', Edinburgh: Down's Syndrome Scotland/Scottish Executive.
  • Wilkinson, H., Kerr, D., Cunningham, C. and Rae, C. (2004) 'Home for good? Preparing to support people with learning difficulty in residential settings when they develop dementia.' Brighton: Pavilion Press.

• Young onset dementiaOpen

  Key issues

  • Alzheimer's Research Trust (2010) 'Dementia 2010' Cambridge: Alzheimer's Research Trust.
  • Alzheimer's Society (2010) 'Younger people with dementia'. Alzheimer's Society factsheet 440.
  • Alzheimer's Society (2008) 'Dementia: Out of the shadows' London: Alzheimer's Society.
  • Baldwin, R. and Murray, M. (eds) (2003) 'Younger people with dementia: A multidisciplinary approach' London: Martin Dunitz.
  • Blossom, S. and Brayne, C. (2008) 'Prevalence and projections of dementia', in M. Downs and B. Bowers (eds) 'Excellence in dementia care: Research into practice', Maidenhead: McGraw Hill/Open University Press.
  • YoungDementia UK is the new name for the Clive Project, an Oxford-based service that offers care and support for younger people with dementia and their families. It was begun by Helen Beaumont whose husband Clive had young onset dementia. Go to the website of YoungDementia UK to find out more about young onset dementia.
  • Kerr, D. (2007) 'Understanding learning disability and dementia: Developing effective interventions' London: Jessica Kingsley Publishers.
  • Moniz-Cook, E. and Manthorpe, J. (2009) (eds) 'Early psychosocial/interventions in dementia'London: Jessica Kingsley Publishers.
  • O'Hara, M. (2008) 'Bridging the gap'. 'The Guardian'. 6 February 2008.
  • Parsons, M. (2001) 'Younger people with dementia: coming out of the shadows', in T. Adams and J. Manthorpe (eds) 'Dementia care' London: Arnold Publishers.
  • Walton, J. (1999) 'Young-onset dementia', in T. Adams, and C. Clarke (eds) (1999) 'Dementia care: Developing partnerships in practice' London: Balliere Tindall.

  Diagnosis and early stages for younger people

  • Alzheimer's Society (2010) 'Counselling: how can it help' Factsheet 445.
  • Alzheimer's Society (2010) 'Family ties''Living with dementia newsletter' June.
  • Alzheimer's Society (2008) 'Dementia: Out of the shadows' London: Alzheimer's Society.
  • Wislowski, A. (2006) 'Voting rights for older Americans with dementia: implications for health care providers''Nursing Outlook', vol 54, pp 68–73.

  Services and support for younger people

  • Alzheimer's Society (2010) 'Direct payments', Factsheet 473.
  • Alzheimer Scotland (2010) 'Let's get personal: personalisation and dementia' Edinburgh: Alzheimer Scotland.
  • Clive Project.
  • Dementia Adventure.
  • Mitchell, E. (2010)' It's me Grandma! It's me'London: Alzheimer's Society.
  • The Royal College of Psychiatrists and Alzheimer's Society (2006) 'Services for younger people with Alzheimer's disease and other dementias' London: RCP.
  • Social Care Institute for Excellence (2010) 'SCIE Report 20: Personalisation, a rough guide'.

  Living with young onset dementia

  • Bartlett, R. and O'Connor, D. (2010) 'Broadening the dementia debate: Toward social citizenship.' Bristol: Policy Press.
  • Braudy-Harris, P. and Keady, J. (2009) 'Selfhood in younger onset dementia: transitions and testimonies''Aging and Mental Health', vol 13, no 3, pp 437–44.
  • Cantley, C., Woodhouse, J. and Smith, M. (2005) 'Listen to us: Involving people with dementia in planning and developing services', Newcastle: Dementia North, Northumbria University.
  • Clare, L. (2002) 'We'll fight as long as we can: coping with the onset of Alzheimer's disease''Aging and Mental Health', vol 6, 2, pp 139–48.
  • DASNI's website: Dementia Advisory Support Network International, a worldwide organisation run by and for those diagnosed with dementia; see www.dasninternational.org
  • Hope, K., Pulsford, D., Thompson, R., Capstick, A. and Heyward, T. (2007) 'Hearing the voice of people with dementia in professional education''Nurse Education Today', vol 27, pp 821–24.
  • McGowin, D.F. (1994) 'Living in the labyrinth: A personal journey through the maze'. New York: Delacote Press.
  • The Scottish Dementia Working Group's website.

• End of life careOpen

  Introduction

  • Alzheimer Europe Report (2008) 'Guidelines on good end of life care for people with dementia.' Luxembourg: Alzheimer Europe.
  • Gold Standards Framework: An evidence based approach to care in the final years of life for people with any end stage illness in any setting.
  • 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: An integrated care pathway to improve quality of the dying in the last hours and days of life. It is recommended as a best practice model by the Department of Health.
  • 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.
  • NHS National End of Life Care Programme (2010) 'Care towards the end of life for people with dementia: a resource guide' (PDF). Online guide.
  • National Council for Palliative Care/Dying Matters Coalition (2011) 'Difficult conversations: making it easier to talk to people with dementia about the end of life'. London: NCPC. Available to download from NCPC website for a charge

  Pain in advanced dementia

  • Abbey Pain Tool: visit the website of Dementia Care Australia to read about this 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.
  • NHS National End of Life Care Programme (2010) 'Care towards the end of life for people with dementia: a resource guide' (PDF). Online guide.

  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. NCCP
  • NHS National End of Life Care Programme (2010) 'Care towards the end of life for people with dementia: a resource guide' (PDF). Online guide.

  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.

  Care in the last days and hours of life

  • The Gold Standards Framework: An evidence based approach to care in the final years of life for people with any end stage illness in any setting.
  • Liverpool Care Pathway for the Dying Patient: An integrated care pathway to improve quality of the dying in the last hours and days of life. It is recommended as a best practice model by the Department of Health.
  • 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.
  • NHS National End of Life Care Programme (2010) 'Care towards the end of life for people with dementia: a resource guide' (PDF). Online guide.
  • National Council for Palliative Care/Dying Matters Coalition (2011) 'Difficult conversations: making it easier to talk to people with dementia about the end of life'. London: NCPC. Available to download from NCPC website for a charge
  • National Council for Palliative Care/Dying Matters Coalition (2011) 'Difficult conversations: making it easier to talk to people with dementia about the end of life'. London: NCPC. Available to download from NCPC website for a charge

For further resources visit the dementia links page.

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