Abstract
The term “dementia” refers to a group of symptoms that are caused by different neurodegenerative diseases, the most common of which are Alzheimer’s disease and vascular dementia. The disease process is progressive, gradually affecting almost all areas of brain functioning. Although treatments exist for dementia, the condition is not curable. With the population profile of many countries becoming increasingly dominated by older people, the number of people who are living with dementia is steadily increasing while the costs of funding care are also rising. The impact of dementia is widespread. It affects not just the person living with the condition, but also those members of their family and neighbours who provide care. It is a highly stigmatised illness, and a range of social factors, including class and ethnicity, play important roles in determining how dementia is experienced, as well as the type of support that people living with their condition can draw upon. The final section of this chapter concerns service provision across the whole life course of the condition, stressing the importance of post-diagnostic support in terms of helping people live well with dementia.
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Notes
- 1.
One can argue that vascular dementia—where damage results from a series of strokes—can be seen as not progressive as long as further strokes do not occur to further incur harm.
References
YouGov. (2012). Are you worried about dementia? Available from https://yougov.co.uk/topics/lifestyle/articles-reports/2012/05/22/are-you-worried-about-dementia.
Kessler, E. M., Bowen, C. E., Baer, M., Froelich, L., & Wahl, H. W. (2012). Dementia worry: A psychological examination of an unexplored phenomenon. European Journal of Ageing, 9(4), 275–284.
Kaszniak, A. W., & Kaszniak, A. W. (2002). Dementia. In V. S. Ramachandran (Ed.), Encyclopedia of the human brain (Four-Volume Set). Cambridge, MA: Academic Press.
Alzheimer’s Society. (2017). Who gets dementia? Available from https://www.alzheimers.org.uk/info/20007/types_of_dementia/1/what_is_dementia/4.
NHS England. (2018). Dementia. Available from https://www.england.nhs.uk/mental-health/dementia/.
Goffman, E. (1990). Stigma: Notes on the management of spoiled identity. London: Penguin Books.
Mason-Whitehead, E. (2010). Stigma. In SAGE key concepts: Key concepts in palliative care [Internet]. London, UK: Sage. Available from https://search.credoreference.com/content/entry/sageukjlcz/stigma/0.
Mental Health Foundation. (2018). Stigma and discrimination. Available from https://www.mentalhealth.org.uk/a-to-z/s/stigma-and-discrimination.
UK AsR. (2014). Report highlights social stigma surrounding dementia. Available from https://www.alzheimersresearchuk.org/report-highlights-social-stigma-surrounding-dementia/.
Bamford, S., Holley-Moore, G., & Watson, J. (2014). New perspectives and approaches to understanding dementia and stigma. International Longevity Centre.
Cuddy, A. J., & Fiske, S. T. (2002). Doddering but dear: Process, content, and function in stereotyping of older persons. In T. D. Nelson (Ed.), Ageism: Stereotyping and prejudice against older persons. Cambridge: MIT Press.
Diekfuss, J. A., De Larwelle, J., & McFadden, S. H. (2018). Diagnosis makes a difference: Perceptions of older persons with dementia symptoms. Experimental Aging Research, 44(2), 148–161.
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders: DSM-5 (5th ed.). Washington, DC: American Psychiatric Association.
Conway, M. (2018). Can we delay the progression of Alzheimer’s Disease? University of the West of England. Available from https://www1.uwe.ac.uk/hls/research/biosciences/projects/delayingalzheimersdisease.aspx.
British Psychological Society. (2016). Psychological dimensions of dementia: Putting the person at the centre of care. Leicester: British Psychological Society.
Alzheimer’s Society. (2014). Alzheimer’s Society’s view on public health, prevention and dementia. Available from https://www.alzheimers.org.uk/about-us/policy-and-influencing/what-we-think/public-health-prevention-dementia?documentID=2766.
UK Health Forum. (2014). Blackfriars Consensus on promoting brain health: Reducing risks for dementia in the population. London: UK Health Forum.
Public Health England. (2018). Dementia: Applying all our health. Available from https://www.gov.uk/government/publications/dementia-applying-all-our-health/dementia-applying-all-our-health.
Nursing Times. (2014). Dementia ‘more feared than cancer’ by older patients. Available from https://www.nursingtimes.net/roles/older-people-nurses/dementia-more-feared-than-cancer-by-older-patients/5073567.article.
Clare, L., Wilson, B. A., Carter, G., Roth, I., & Hodges, J. R. (2004). Awareness in early-stage Alzheimer’s disease: Relationship to outcome of cognitive rehabilitation. Journal of Clinical and Experimental Neuropsychology, 26(2), 215–226.
Watts, S., Cheston, R., Moniz-Cook, E., Burley, C., & Guss, R. (2013). Post-diagnostic support for people living with dementia. In R. Guss (Ed.), Clinical psychology in the early stage dementia care pathway. St Andrews House, Leicester: British Psychological Society.
Vitaliano, P. P., Russo, J., Young, H. M., Teri, L., & Maiuro, R. D. (1991). Predictors of burden in spouse caregivers of individuals with Alzheimer’s disease. Psychology and Aging, 6(3), 392.
National Institute for Health Research. (2016). Understanding the hidden needs of carers. Available from https://www.dc.nihr.ac.uk/highlights/dementia-carers/understanding-the-hidden-needs-of-carers.htm.
Alzheimer’s Society. (2018). Getting help and support. Available from https://www.alzheimers.org.uk/get-support/help-dementia-care/getting-support.
Alzheimer’s Society. (2018). Replacement care (respite care) in England. Available from https://www.alzheimers.org.uk/get-support/help-dementia-care/replacement-care-respite-care-england.
NHS. (2018). Dementia and relationships. Available from https://www.nhs.uk/conditions/dementia/relationships-and-dementia/.
Alzheimer’s Society. (2014). Dementia UK. London: Alzheimer’s Society.
Office PMs (Ed.). (2015). Prime Minister’s challenge on dementia 2020. London: Cabinet Office.
Jones, I. R. (2017). Social class, dementia and the fourth age. Sociology of Health & Illness, 39(2), 303–317.
Connolly, A., Gaehl, E., Martin, H., Morris, J., & Purandare, N. (2011). Underdiagnosis of dementia in primary care: Variations in the observed prevalence and comparisons to the expected prevalence. Aging & Mental Health, 15(8), 978–984.
Matthews, F. E., McKeith, I., Bond, J., & Brayne, C. (2007). Reaching the population with dementia drugs: What are the challenges? International Journal of Geriatric Psychiatry: A Journal of the Psychiatry of Late Life and Allied Sciences, 22(7), 627–631.
Dementia APPGo (Ed.). (2013). Dementia does not discriminate: The experiences of black, Asian and minority ethnic communities. London: The Stationery Office.
Truswell, D., & Tavera, Y. (2016). An electronic resource handbook for CNWL memory services: Dementia information for black, Asian and minority ethnic communities. Chart, 1, 13.
Jutlla, K. (2013). Ethnicity and cultural diversity in dementia care: A review of the research. Journal of Dementia Care, 21(2), 33–39.
Department of Health. (2005). Delivering race equality in mental health care: An action plan for reform inside and outside services and The government’s response to the independent inquiry into the death of David Bennett (p. 92). London: Department of Health.
Mukadam, N., Cooper, C., & Livingston, G. (2011). A systematic review of ethnicity and pathways to care in dementia. International Journal of Geriatric Psychiatry, 26(1), 12–20.
Tuerk, R., & Sauer, J. (2015). Dementia in a Black and minority ethnic population: Characteristics of presentation to an inner London memory service. BJPsych Bulletin, 39(4), 162–166.
Baghirathan, S., Cheston, R., Hui, R., Chacon, A., Shears, P., & Currie, K. (2018). A grounded theory analysis of the experiences of carers for people living with dementia from three BAME communities: Balancing the need for support against fears of being diminished. Dementia. https://doi.org/10.1177/1471301218804714.
Parveen, S., Peltier, C., & Oyebode, J. R. (2017). Perceptions of dementia and use of services in minority ethnic communities: A scoping exercise. Health and Social Care in the Community, 25(2), 734–742.
Bender, M., & Cheston, R. (2000). Understanding dementia: The man with the worried eyes. London: Jessica Kingsley.
Bedford, O. A. (2004). The individual experience of guilt and shame in Chinese culture. Culture, 10(1), 29–52.
Ee, Heok K. (2010). The aging brain and mind: Cultural and anthroplogical perspectives. In E. S. Krishnamoorthy, M. Prince, & J. L. Cummings (Eds.), Dementia: A global approach (pp. 1–7). Cambridge: Cambridge University Press.
Lawrence, V., Samsi, K., Banerjee, S., Morgan, C., & Murray, J. (2010). Threat to valued elements of life: The experience of dementia across three ethnic groups. Gerontologist, 51(1), 39–50.
Banerjee, S., & Owen, J. (2009). Living well with dementia: A national dementia strategy. London: Department of Health.
The Good Care Group. (2018). What is a dementia care pathway? Available from https://www.thegoodcaregroup.com/live-in-care/dementia-care/dementia-care-pathway/.
Care Quality Commission. (2014). Cracks in the pathway: People’s experiences of dementia care as they move between care homes and hospitals. London: Care Quality Commission.
La Fontaine, J., Buckell, A., Knibbs, T., & Palfrey, M. (2014). Early and timely intervention in dementia: Pre-assessment counselling. Clinical Psychology in the Early Stage Dementia Care Pathway, 6.
Cheston, R., Marshall, A., Jones, A., Spreadbury, J., & Coleman, P. (2018). Living well with dementia groups: Changes in participant and therapist verbal behaviour. Aging & Mental Health, 22(1), 61–69.
Laakkonen, M.-L., Savikko, N., Hölttä, E., Tilvis, R., Strandberg, T., Kautiainen, H., et al. (2013). Self-management groups for people with dementia and their spousal caregivers. A randomized, controlled trial. Baseline findings and feasibility. European Geriatric Medicine, 4(6): 389–393.
Laakkonen, M. L., Kautiainen, H., Hölttä, E., Savikko, N., Tilvis, R. S., Strandberg, T. E., et al. (2016). Effects of self-management groups for people with dementia and their spouses—Randomized controlled trial. Journal of the American Geriatrics Society, 64(4), 752–760.
Quinn, C., Toms, G., Jones, C., Brand, A., Edwards, R. T., Sanders, F., et al. (2016). A pilot randomized controlled trial of a self-management group intervention for people with early-stage dementia (The SMART study). International Psychogeriatrics / IPA, 28(5), 787–800.
Kiosses, D. N., Ravdin, L. D., Gross, J. J., Raue, P., Kotbi, N., & Alexopoulos, G. S. (2015). Problem adaptation therapy for older adults with major depression and cognitive impairment: A randomized clinical trial. JAMA Psychiatry, 72(1), 22–30.
Spector, A., Charlesworth, G., King, M., Lattimer, M., Sadek, S., Marston, L., et al. (2015). Cognitive-behavioural therapy for anxiety in dementia: Pilot randomised controlled trial. The British Journal of Psychiatry, 206(6), 509–516.
Stanley, M. A., Calleo, J., Bush, A. L., Wilson, N., Snow, A. L., Kraus-Schuman, C., et al. (2013). The peaceful mind program: A pilot test of a cognitive-behavioral therapy-based intervention for anxious patients with Dementia. The American Journal of Geriatric Psychiatry, 21(7), 696–708.
Mittelman, M. S., Roth, D. L., Coon, D. W., & Haley, W. E. (2004). Sustained benefit of supportive intervention for depressive symptoms in caregivers of patients with Alzheimer’s disease. American Journal of Psychiatry, 161(5), 850–856.
British Psychological Society’s Dementia Advisory Group. (2018). Psychological therapies for people with dementia. Leicester: British Psychological Society’s Dementia Advisory Group.
Christopher, G. (2014). The psychology of ageing: From mind to society. Basingstoke: Palgrave Macmillan.
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Cheston, R., Christopher, G. (2019). Dementia in Context. In: Confronting the Existential Threat of Dementia. Palgrave Pivot, Cham. https://doi.org/10.1007/978-3-030-12350-5_2
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