Hostname: page-component-586b7cd67f-2brh9 Total loading time: 0 Render date: 2024-11-26T05:12:28.886Z Has data issue: false hasContentIssue false
  • English
  • Français

Looking ahead to a future with Alzheimer's disease: coping with the unknown

Published online by Cambridge University Press:  28 March 2019

Rosalie Marie Ashworth Open the ORCID record for Rosalie Marie Ashworth [Opens in a new window]
Rosalie Marie Ashworth*
Affiliation:
School of Psychology, University of Exeter, Exeter, UK
*
Email: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

The conceptualisation of Alzheimer's disease as an illness with ‘no future’ exposes people with the condition to significant fear and stress. Therefore, exploring how people look ahead to the future in the face of Alzheimer's disease is of foremost importance. Semi-structured interviews (N = 14) explored the future outlook of people with early (N = 5) and late-onset (N = 7) Alzheimer's disease and those who support them (N = 14). Thematic analysis identified how participants managed their changing futures through focusing on positive information, and taking ‘one day at a time’. Younger and older people shared similar future outlook and subsequent coping strategies, as predicted by Carstensen's Socioemotional Selectivity Theory. Both people with Alzheimer's disease and those who support them avoided looking far ahead as a way of managing the uncertain future, and had little awareness of future planning in the context of current policies. Such avoidance suggests that policy which encourages future planning should consider its utility and explore ways of helping people to plan, whilst focusing on daily living.

Keywords

early onsetlate-onsetfuturecopingAlzheimer'sSocioemotional Selectivity Theory
Type
Article
Information
Ageing & Society , Volume 40 , Issue 8 , August 2020 , pp. 1647 - 1668
Copyright
Copyright © Cambridge University Press 2019

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Abram, M, Picard, L, Navarro, B and Piolino, P (2014) Mechanisms of remembering the past and imagining the future – new data from autobiographical memory tasks in a lifespan approach. Consciousness and Cognition 29, 76–89.10.1016/j.concog.2014.07.011CrossRefGoogle Scholar
Addis, DR, Musicaro, R, Pan, L and Schacter, DL (2010) Episodic simulation of past and future events in older adults: evidence from an experimental recombination task. Psychology and Aging 25, 369–376.10.1037/a0017280CrossRefGoogle ScholarPubMed
Addis, DR, Sacchetti, DC, Ally, BA, Budson, AE and Schacter, DL (2009) Episodic simulation of future events is impaired in mild Alzheimer's disease. Neuropsychologia 47, 2660–2671.10.1016/j.neuropsychologia.2009.05.018CrossRefGoogle ScholarPubMed
Ashworth, R (2014) More than just a cup of tea: everyday cultural practices and interactions in research. Generations Review 24, 4–10.Google Scholar
Ashworth, R (2017) Perceptions of stigma among people affected by early and late-onset Alzheimer's disease. Journal of Health Psychology 1–21. Available online at https://journals.sagepub.com/doi/abs/10.1177/1359105317720818 [Accessed 14 March 2019].Google ScholarPubMed
Benbow, SM and Jolley, D (2012) Dementia: stigma and its effects. Neurodegenerative Disease Management 2, 165–172.10.2217/nmt.12.7CrossRefGoogle Scholar
Black, B, Brandt, J, Rabins, PV, Samus, QM, Stelle, CD, Lykestsos, CG and Rosenblatt, A (2008) Predictors of providing informed consent or assent for research participation in assisted living residents. American Journal of Geriatric Psychiatry 16, 83–91.10.1097/JGP.0b013e318157cabdCrossRefGoogle ScholarPubMed
Bohn, L, See, STK and Fung, HH (2016) Time perspective and positivity effects in Alzheimer's disease. Psychology and Aging 31, 574–582.10.1037/pag0000084CrossRefGoogle ScholarPubMed
Braun, V and Clarke, V (2006) Using thematic analysis in psychology. Qualitative Research in Psychology 3, 77–101.10.1191/1478088706qp063oaCrossRefGoogle Scholar
Brodaty, H and Donkin, M (2009) Family caregivers of people with dementia. Dialogues of Clinical Neuroscience 11, 217–228.Google ScholarPubMed
Brown, P and Graaf, S (2013) Considering a future which may not exist: the construction of time and expectations amidst advanced-stage cancer. Health, Risk and Society 15, 543–560.10.1080/13698575.2013.830081CrossRefGoogle Scholar
Bryden, C (2016) Nothing About Us, Without Us! 20 Years of Dementia Advocacy. London: Jessica Kingsley.Google Scholar
Bryman, A, Becker, S and Sempik, J (2008) Quality criteria for quantitative, qualitative and mixed methods research: a view from social policy. International Journal of Social Research Methodology 11, 261–276.10.1080/13645570701401644CrossRefGoogle Scholar
Buckner, RL and Carroll, DC (2007) Self-projection and the brain. Trends in Cognitive Science 11, 49–57.10.1016/j.tics.2006.11.004CrossRefGoogle ScholarPubMed
Bunn, F, Goodman, C, Sworn, K, Rait, G, Brayne, C, Robinson, L, McNeilly, E and Iliffe, S (2012) Psychosocial factors that shape patient and carer experiences of dementia diagnosis and treatment: a systematic review of qualitative studies. PLOS Medicine 9, e1001331.10.1371/journal.pmed.1001331CrossRefGoogle ScholarPubMed
Carr, DB and Ott, BR (2010) The older adult driver with cognitive impairment: ‘it's a very frustrating life’. JAMA: The Journal of the American Medical Association 303, 1632–1641.10.1001/jama.2010.481CrossRefGoogle Scholar
Carstensen, LL (1991) Selectivity theory: social activity in life-span context. Annual Review of Gerontology and Geriatrics 11, 195–217.Google Scholar
Carstensen, LL, Isaacowitz, DM and Charles, ST (1999) Taking time seriously: a theory of socioemotional selectivity. American Psychologist 54, 165–181.10.1037/0003-066X.54.3.165CrossRefGoogle ScholarPubMed
Chaston, D (2010) Younger adults with dementia: a strategy to promote awareness and transform perceptions. Contemporary Nurse 34, 221–229.10.5172/conu.2010.34.2.221CrossRefGoogle ScholarPubMed
Chenoweth, L, King, MT, Jeon, Y-H, Brodaty, H, Stein-Parbury, J, Norman, R, Hass, M and Luscombe, G (2009) Caring for Aged Dementia Care Resident Study (CADRES) of person-centred care, dementia-care mapping, and usual care in dementia: a cluster-randomised trial. Lancet Neurology 8, 317–325.10.1016/S1474-4422(09)70045-6CrossRefGoogle ScholarPubMed
Cowdell, F (2014) ‘That's How We Do It … We Treat Them All The Same’: An Exploration of the Experiences of Patients, Lay Carers and Health and Social Care Staff of the Care Received by Older People with Dementia in Acute Hospital Settings. Cambridge: Cambridge Scholars Publishing.Google Scholar
De Vito, S, Gamboz, N and Brandimonte, MA (2012) What differentiates episodic future thinking from complex scene imagery? Conscious Cognition 21, 813–823.10.1016/j.concog.2012.01.013CrossRefGoogle ScholarPubMed
Department of Health (2009) Living Well with Dementia: A National Dementia Strategy. Available at https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/168220/dh_094051.pdf.Google Scholar
Department of Health (2015) Prime Minister's Challenge on Dementia 2020. London: Williams Lea. Available at https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/414344/pm-dementia2020.pdf.Google Scholar
Dewing, J (2007) Participatory research: a method for process consent with persons who have dementia. Dementia 6, 11–25.10.1177/1471301207075625CrossRefGoogle Scholar
Doody, RS, Pavlik, V, Massman, P, Rountree, S, Darby, E and Chan, W (2010) Predicting progression of Alzheimer's disease. Alzheimer's Research and Therapy 2, 2–10.10.1186/alzrt25CrossRefGoogle ScholarPubMed
Dubois, B, Padovani, A, Schletens, P, Rossi, A and Dell'Agnello, G (2016) Timely diagnosis for Alzheimer's disease: a literature review on benefits and challenges. Journal of Alzheimer's Disease 49, 617–631.10.3233/JAD-150692CrossRefGoogle ScholarPubMed
Entwistle, VA and Watt, IS (2013) Treating patients as persons: a capabilities approach to support delivery of person-centered care. American Journal of Bioethics 13, 29–39.10.1080/15265161.2013.802060CrossRefGoogle ScholarPubMed
Feldman, H, Van Baelen, B, Kavanagh, SM and Torfs, KEL (2005) Cognition, function, and caregiving time patterns in patients with mild-to-moderate Alzheimer's disease: a 12-month analysis. Alzheimer's Disease and Associated Disorders 19, 29–36.10.1097/01.wad.0000157065.43282.bcCrossRefGoogle ScholarPubMed
Gillies, B and Johnston, G (2004) Identity loss and maintenance: commonality of experience in cancer and dementia. European Journal of Cancer Care 13, 436–442.10.1111/j.1365-2354.2004.00550.xCrossRefGoogle ScholarPubMed
Heckhausen, J, Dixon, RA and Baltes, PB (1989) Gains and losses in development throughout adulthood as perceived by different adult age groups. Developmental Psychology 25, 109–121.10.1037/0012-1649.25.1.109CrossRefGoogle Scholar
Hicks, JA, Davis, WE, Trent, J and King, LA (2012) Positive affect, meaning in life, and future time perspective: an application of Socioemotional Selectivity Theory. Psychology and Aging 27, 181–189.10.1037/a0023965CrossRefGoogle ScholarPubMed
Higgins, P (2013) Involving people with dementia in research. Nursing Times 109, 20–23.Google ScholarPubMed
Iliffe, S, Manthorpe, J and Eden, A (2003) Sooner or later? Issues in the early diagnosis of dementia in general practice: a qualitative study. Family Practice 20, 376–381.10.1093/fampra/cmg407CrossRefGoogle ScholarPubMed
Jalbert, JJ, Daiello, LA and Lapane, KL (2008) Dementia of the Alzheimer type. Epidemiologic Reviews 30, 15–34.10.1093/epirev/mxn008CrossRefGoogle ScholarPubMed
Karg, N, Graessal, E, Randzio, O and Pendergrass, A (2018) Dementia as a predictor of care-related quality of life in informal caregivers: a cross-sectional study to investigate differences in health-related outcomes between dementia and non-dementia caregivers. BMC Geriatrics 18, 1–9.10.1186/s12877-018-0885-1CrossRefGoogle ScholarPubMed
Karlawish, JH, Casarett, D, Klocinski, J and Sankar, P (2001) How do AD patients and their caregivers decide whether to enroll in a clinical trial? Neurology 56, 789–792.10.1212/WNL.56.6.789CrossRefGoogle Scholar
Kirshbaum, MNY, Carey, I, Purcell, N and Nash, S (2011) Talking about dying and death: a focus group study to explore a local community perspective. Nursing Reports 1, 29–34.10.4081/nursrep.2011.e8CrossRefGoogle Scholar
Koedam, ELGE, Lauffer, V, Van der Vlies, AE, Van der Flier, WM, Scheltens, P and Pijnenburg, YAL (2010) Early- versus late-onset Alzheimer's disease: more than age alone. Journal of Alzheimer's Disease 19, 1401–1408.10.3233/JAD-2010-1337CrossRefGoogle ScholarPubMed
Kristiansen, PJL, Normann, HK, Norberg, A, Fjelltun, A-M and Skaalvik, MW (2017) How do people in the early stage of Alzheimer's disease see their future? Dementia 16, 145–157.10.1177/1471301215584223CrossRefGoogle ScholarPubMed
Livingston, G, Leavey, G, Manela, M, Livingston, D, Rait, G, Sampson, E, Bavishi, S, Shahriyamolki, K and Cooper, C (2010) Making decisions for people with dementia who lack capacity: qualitative study of family carers in UK. The BMJ 341, c4184.10.1136/bmj.c4184CrossRefGoogle ScholarPubMed
Lockenhoff, CE and Carstensen, LL (2004) Socioemotional Selectivity Theory, aging and health: the increasingly delicate balance between regulating emotions and making tough choices. Journal of Personality 72, 1395–1424.10.1111/j.1467-6494.2004.00301.xCrossRefGoogle ScholarPubMed
Mark, RE (2012) Understanding the individual with Alzheimer's disease: can Socioemotional Selectivity Theory guide us? Advances in Alzheimer's Disease 1, 77–86.10.4236/aad.2012.13010CrossRefGoogle Scholar
Mason, M (2010) Sample size and saturation in PhD studies using qualitative interviews. Forum: Qualitative Social Research 11, 1–19.Google Scholar
McParland, P, Devine, P, Innes, A and Gayle, V (2012) Dementia knowledge and attitudes of the general public in Northern Ireland: an analysis of national survey data. International Psychogeriatrics 24, 1600–1613.10.1017/S1041610212000658CrossRefGoogle ScholarPubMed
Milne, A (2010) The ‘D’ word: reflections on the relationship between stigma, discrimination and dementia. Journal of Mental Health 19, 227–233.10.3109/09638231003728166CrossRefGoogle ScholarPubMed
Molyneaux, V, Butchard, S, Simpson, J and Murray, C (2011) Reconsidering the term ‘carer’: a critique of the universal adoption of the term ‘carer’. Ageing & Society 31, 422–437.10.1017/S0144686X10001066CrossRefGoogle Scholar
Moravcsik, A (2014) Transparency: the revolution in qualitative research. PS: Political Science and Politics 47, 48–53.Google Scholar
O'Connor, D (2007) Self-identifying as a caregiver: exploring the positioning process. Journal of Aging Studies 21, 165–174.10.1016/j.jaging.2006.06.002CrossRefGoogle Scholar
Pinner, G and Bouman, WP (2003) Attitudes of patients with mild dementia and their carers towards a disclosure of the diagnosis. International Psychogeriatrics 15, 279–288.10.1017/S1041610203009530CrossRefGoogle ScholarPubMed
Poole, M, Bamford, C, McLellan, E, Lee, RL, Exley, C, Hughes, JC, Harrison-Dening, K and Robinson, L (2018) End-of-life care: a qualitative study comparing the views of people with dementia and family carers. Palliative Medicine 32, 631–642.10.1177/0269216317736033CrossRefGoogle ScholarPubMed
Pot, AM and Petrea, I (2013) Bupa/ADI Report: Improving Dementia Care Worldwide: Ideas and Advice on Developing and Implementing a National Dementia Plan. London: Bupa/ADI.Google Scholar
Proctor, R, Martin, C and Hewison, J (2002) When a little knowledge is a dangerous thing…: a study of carers’ knowledge about dementia, preferred coping style and psychological distress. International Journal of Geriatric Psychiatry 17, 1133–1139.10.1002/gps.762CrossRefGoogle Scholar
QSR International (2012) NVivo 10 (Computer software). Melbourne: QSR International.Google Scholar
Ramsbottom, K and Kelley, ML (2014) Developing strategies to improve advance care planning in long term care homes: giving voice to residents and their family members. International Journal of Palliative Care. 2014, Article ID 358457. Available online at https://www.hindawi.com/journals/ijpc/2014/358457/abs/ [Accessed 14 March 2019]10.1155/2014/358457CrossRefGoogle Scholar
Robinson, L, Gemski, A, Abley, C, Bond, J, Keady, J, Campbell, S, Samsi, K and Manthorpe, J (2011) The transition to dementia – individual and family experiences of receiving a diagnosis: a review. International Psychogeriatrics 23, 1026–1043.10.1017/S1041610210002437CrossRefGoogle ScholarPubMed
Robinson, SM, Canavan, M and O'Keeffe, ST (2014) Preferences of older people for early diagnosis and disclosure of Alzheimer's disease (AD) before and after considering potential risks and benefits. Archives of Gerontology and Geriatrics 59, 607–612.10.1016/j.archger.2014.07.010CrossRefGoogle ScholarPubMed
Samsi, K and Manthorpe, J (2014) Care pathways for dementia: current perspective. Clinical Interventions in Aging 9, 2055–2063.10.2147/CIA.S70628CrossRefGoogle Scholar
Schacter, DL and Addis, DR (2007) The cognitive neuroscience of constructive memory: remembering the past and imagining the future. Philosophical Transactions of the Royal Society B: Biological Sciences 362, 773–786.10.1098/rstb.2007.2087CrossRefGoogle ScholarPubMed
Schacter, DL, Addis, DR and Buckner, RL (2007) Remembering the past to imagine the future: the prospective brain. Neuroscience 8, 657–661.Google ScholarPubMed
Schacter, DL, Gaesser, B and Addis, DR (2013) Remembering the past and imagining the future in the elderly. Gerontology 59, 143–151.10.1159/000342198CrossRefGoogle ScholarPubMed
Scodellaro, C and Pin, S (2013) The ambiguous relationships between aging and Alzheimer's disease: a critical literature review. Dementia (London) 12, 137–151.10.1177/1471301211421230CrossRefGoogle ScholarPubMed
Scottish Government (2013) Scotland's National Dementia Strategy 2013–2015. Available at http://www.gov.scot/Topics/Health/Services/Mental-Health/Dementia/DementiaStrategy1316.Google Scholar
Scottish Government (2017) Scotland's National Dementia Strategy 2017–2020. Available at http://www.gov.scot/Publications/2017/06/7735.Google Scholar
Sharot, T (2011) The optimism bias. Current Biology 21, 941–945.10.1016/j.cub.2011.10.030CrossRefGoogle ScholarPubMed
Shenton, AK (2004) Strategies for ensuring trustworthiness in qualitative research projects. Education for Information 22, 63–75.10.3233/EFI-2004-22201CrossRefGoogle Scholar
Simmons, H (2011) Getting Post-diagnostic Support Right for People with Dementia. Available at http://www.alzscot.org./assets/0001/1226/Getting_post_diagnostic_support_right.pdf.Google Scholar
Sinclair, JB, Oyebode, JR and Owens, RG (2016) Consensus views on advance care planning for dementia: a Delphi study. Health and Social Care in the Community 24, 165–174.10.1111/hsc.12191CrossRefGoogle ScholarPubMed
Small, N and Rhodes, P (2001) User Involvement and the Seriously Ill. Available at http://www.jrf.org.uk/publications/user-involvement-and-seriously-ill.Google Scholar
Sugarman, J, Cain, C, Wallace, R and Welsh-Bohmer, KA (2001) How proxies make decisions about research for patients with Alzheimer's disease. Journal of the American Geriatrics Society 49, 1110–1119.10.1046/j.1532-5415.2001.49218.xCrossRefGoogle ScholarPubMed
Szpunar, KK and Schacter, DL (2013) Get real: effects of repeated simulation and emotion on the perceived plausibility of future experiences. Journal of Experimental Psychology: General 142, 323–327.10.1037/a0028877CrossRefGoogle ScholarPubMed
Taylor, BD and Tripodes, S (2001) The effects of driving cessation on the elderly with dementia and their caregivers. Accident Analysis and Prevention 33, 519–528.10.1016/S0001-4575(00)00065-8CrossRefGoogle ScholarPubMed
Tulving, E (2005) Episodic memory and autonoesis: uniquely human? In Terrace, HS and Metcalfe, J (eds), The Missing Link in Cognition: Origins of Self-reflective Consciousness. New York, NY: Oxford University Press, pp. 3–56.10.1093/acprof:oso/9780195161564.003.0001CrossRefGoogle Scholar
Vaismoradi, M, Jones, J, Turunen, H and Snelgrove, S (2016) Theme development in qualitative content analysis and thematic analysis. Journal of Nursing Education and Practice 6, 100–110.10.5430/jnep.v6n5p100CrossRefGoogle Scholar