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Couples affected by dementia and their experiences of advance care planning: a grounded theory study

Published online by Cambridge University Press:  27 September 2018

Tony Ryan Open the ORCID record for Tony Ryan [Opens in a new window]  and
Jane McKeown
Tony Ryan*
Affiliation:
School of Nursing & Midwifery, University of Sheffield, Sheffield, UK
Jane McKeown
Affiliation:
School of Nursing & Midwifery, University of Sheffield, Sheffield, UK
*
*Corresponding author. Email: [email protected]
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Abstract

Global policy places emphasis on the implementation and usage of advance care planning (ACP) to inform decision making at the end of life. For people with dementia, where its use is encouraged at the point of diagnosis, utilisation of ACP is relatively poor, particularly in parts of Europe. Using a constructivist grounded theory methodology, this study explores the ways in which co-residing couples considered ACP. Specifically, it seeks to understand the ways in which people with dementia and their long-term co-residing partners consider and plan, or do not plan, for future medical and social care. Sixteen participants were interviewed. They identified the importance of relationships in the process of planning alongside an absence of formal service support and as a result few engaged in ACP. The study recognises the fundamental challenges for couples in being obliged to consider end-of-life issues whilst making efforts to ‘live well’. Importantly, the paper identifies features of the ACP experience of a relational and biographical nature. The paper challenges the relevance of current global policy and practice, concluding that what is evident is a process of ‘emergent planning’ through which couples build upon their knowledge of dementia, their networks and relationships, and a number of ‘tipping points’ leading them to ACP. The relational and collective nature of future planning is also emphasised.

Keywords

dementiaadvance care planningfamily care-givingpalliative caregrounded theory
Type
Article
Information
Ageing & Society , Volume 40 , Issue 2 , February 2020 , pp. 439 - 460
Copyright
Copyright © Cambridge University Press 2018 

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References

Abele, P and Morley, JE (2016) Advance directives: the key to a good death? Journal of the American Medical Directors Association 17, 279–283.Google Scholar
Bezzina, A (2009) Prevalence of advance care directives in aged care facilities of the Northern Illawarra. Emergency Medicine Australasia 5, 379–385.Google Scholar
Bjørnholt, M and Farstad, GR (2014) ‘Am I rambling?’ On the advantages of interviewing couples together. Qualitative Research 14, 3–19.Google Scholar
Borgström, E (2015) Planning for an (un) certain future: choice within English end-of-life care. Current Sociology 63, 700–713.Google Scholar
Brinkman-Stoppelenburg, A, Rietjens, JA and van der Heide, A (2014) The effects of advance care planning on end-of-life care: a systematic review. Palliative Medicine 28, 1000–1025.Google Scholar
Candy, B, Sampson, EL and Jones, L (2009) Enteral tube feeding in older people with advanced dementia: findings from a Cochrane systematic review. International Journal of Palliative Nursing 15, 369–404Google Scholar
Carter, G, van der Steen, JT, Galway, K and Brazil, K (2017) General practitioners’ perceptions of the barriers and solutions to good-quality palliative care in dementia. Dementia 16, 79–95.Google Scholar
Charmaz, K (2014) Constructing Grounded Theory. London: Sage.Google Scholar
Corbin, JM and Strauss, A (1990) Grounded theory research: procedures, canons, and evaluative criteria. Qualitative Sociology 13, 3–21.Google Scholar
Daniels, KJ, Lamson, AL and Hodgson, J (2007) An exploration of the marital relationship and Alzheimer's disease: one couple's story. Families, Systems, & Health 25, 162–177.Google Scholar
Department of Health (2009) Living Well with Dementia. London: Department of Health.Google Scholar
De Vleminck, A, Pardon, K, Houttekier, D, Van den Block, L, Vander Stichele, R and Deliens, L (2015) The prevalence in the general population of advance directives on euthanasia and discussion of end-of-life wishes: a nationwide survey. BMC Palliative Care 1, 71–78.Google Scholar
Dewing, J (2007) Participatory research: a method for process consent with persons who have dementia. Dementia 6, 11–25.Google Scholar
Dickinson, C, Bamford, C, Exley, C, Emmett, C, Hughes, J and Robinson, L (2013) Planning for tomorrow whilst living for today: the views of people with dementia and their families on advance care planning. International Psychogeriatrics 25, 2011–2021.Google Scholar
Fortinsky, RH and Downs, M (2014) Optimizing person-centered transitions in the dementia journey: a comparison of national dementia strategies. Health Affairs 33, 566–573.Google Scholar
Gott, M, Gardiner, C, Small, N, Payne, S, Seamark, D, Barnes, S, Halpin, D and Ruse, C (2009) Barriers to advance care planning in chronic obstructive pulmonary disease. Palliative Medicine 23, 642–648.Google Scholar
Harrison-Dening, K, Jones, L and Sampson, EL (2011) Advance care planning for people with dementia: a review. International Psychogeriatrics 23, 1535–1551.Google Scholar
Hellström, I, Nolan, M and Lundh, U (2005) ‘We do things together’: a case study of ‘couplehood’ in dementia. Dementia 4, 7–22.Google Scholar
Hellström, I, Nolan, M and Lundh, U (2007) Sustaining couplehood: spouses’ strategies for living positively with dementia. Dementia 6, 383–409.Google Scholar
Hendriks, SA, Smalbrugge, M, Hertogh, CM and van der Steen, JT (2014) Dying with dementia: symptoms, treatment, and quality of life in the last week of life. Journal of Pain and Symptom Management 47, 710–720.Google Scholar
Hirschman, KB, Kapo, JM and Karlawish, JH (2008) Identifying the factors that facilitate or hinder advance planning by persons with dementia. Alzheimer Disease and Associated Disorders 22, 293–303.Google Scholar
Kaufman, S (2005) And a Time to Die: How American Hospitals Shape the End of Life. New York, NY: Simon and Schuster.Google Scholar
Kaufman, SR (2010) Time, clinic technologies, and the making of reflexive longevity: the cultural work of time left in an ageing society. Sociology of Health & Illness 32, 225–237.Google Scholar
Kennedy, C, Brooks-Young, P, Gray, CB, Larkin, P, Connolly, M, Wilde-Larsson, B, Larsson, M, Smith, T and Chater, S (2014) Diagnosing dying: an integrative literature review. BMJ Supportive & Palliative Care 4, 263–270.Google Scholar
Laakkonen, ML, Raivio, MM, Eloniemi-Sulkava, U, Tilvis, RS and Pitkälä, KH (2008) Disclosure of dementia diagnosis and the need for advance care planning in individuals with Alzheimer's disease. Journal of the American Geriatrics Society 56, 2156–2157.Google Scholar
Livingston, G, Pitfield, C, Morris, J, Manela, M, Lewis-Holmes, E and Jacobs, H (2012) Care at the end of life for people with dementia living in a care home: a qualitative study of staff experience and attitudes. Journal of Geriatric Psychiatry 6, 643–650.Google Scholar
Lovell, A and Yates, P (2014) Advance care planning in palliative care: a systematic literature review of the contextual factors influencing its uptake 2008–2012. Palliative mEdicine 28, 1026–1035.Google Scholar
Lund, S, Richardson, A and May, C (2015) Barriers to advance care planning at the end of life: an explanatory systematic review of implementation studies. PLOS ONE 10, e0116629.Google Scholar
Marioni, R, Proust-Lima, C, Amieva, H, Brayne, C, Matthews, F, Dartigues, J and Jacqmin-Gadda, H (2015) Social activity, cognitive decline and dementia risk: a 20-year prospective cohort study. BMC Public Health 15, 1089.Google Scholar
Moens, K, Higginson, IJ and Harding, R, on behalf of EURO IMPACT (2014) Are there differences in the prevalence of palliative care-related problems in people living with advanced cancer and eight non-cancer conditions? A systematic review. Journal of Pain and Symptom Management 48, 660–677.Google Scholar
Molyneaux, VJ, Butchard, S, Simpson, J and Murray, C (2012) The co-construction of couplehood in dementia. Dementia 11, 483–502.Google Scholar
Murphy, K, Jordan, F, Hunter, A, Cooney, A and Casey, D (2015) Articulating the strategies for maximising the inclusion of people with dementia in qualitative research studies. Dementia 14, 800–824.Google Scholar
Poppe, M, Burleigh, S and Banerjee, S (2013) Qualitative evaluation of advanced care planning in early dementia (ACP-ED). PLOS ONE 8, e60412.Google Scholar
Prince, M, Bryce, R, Albanese, E, Wimo, A, Ribeiro, W and Ferri, CP (2013) The global prevalence of dementia: a systematic review and meta-analysis. Alzheimer's & Dementia 9, 63–75.Google Scholar
Rafnsson, S, Orrell, M, d'Orsi, E, Hogervorst, E and Steptoe, A (in press) Loneliness, social integration, and incident dementia over 6 years: prospective findings from the English Longitudinal Study of Ageing. Journals of Gerontology: Psychological Sciences and Social Sciences. Available online doi:10.1093/geronb/gbx087.Google Scholar
Robinson, L, Dickinson, C, Bamford, C, Clark, A, Hughes, J and Exley, C (2013) A qualitative study: professionals’ experiences of advance care planning in dementia and palliative care, ‘a good idea in theory but…’. Palliative Medicine 27, 401–408.Google Scholar
Rodwell, M (1998) Social Work Constructivist Research. New York, NY: Garland.Google Scholar
Rosow, K, Holzapfel, A, Karlawish, JH, Baumgart, M, Bain, LJ and Khachaturian, AS (2011) Countrywide strategic plans on Alzheimer's disease: developing the framework for the international battle against Alzheimer's disease. Alzheimer's & Dementia 7, 615–621.Google Scholar
Ryan, T, Gardiner, C, Bellamy, G, Gott, M and Ingleton, C (2012) Barriers and facilitators to the receipt of palliative care for people with dementia: the views of medical and nursing staff. Palliative Medicine 26, 879–886.Google Scholar
Ryan, T, Ingleton, C, Gardiner, C, Parker, C, Gott, M and Noble, B (2013) Symptom burden, palliative care need and predictors of physical and psychological discomfort in two UK hospitals. BMC Palliative Care 12, 11.Google Scholar
Ryan, T, Amen, KM, and McKeown, J (2017) The advance care planning experiences of people with dementia, family caregivers and professionals: a synthesis of the qualitative literature. Annals of Palliative Medicine 6, 380–389.Google Scholar
Ryan, T, Nolan, M, Reid, D and Enderby, P (2008) Using the senses framework to achieve relationship-centred dementia care services: a case example. Dementia: The International Journal of Social Research and Practice 1, 71–93.Google Scholar
Seymour, J, Almack, K and Kennedy, S (2010) Implementing advance care planning: a qualitative study of community nurses’ views and experiences. BMC Palliative Care 9, 4.Google Scholar
Small, N, Froggatt, K and Downs, M (2007) Living and Dying with Dementia: Dialogues About Palliative Care. Oxford: Oxford University Press.Google Scholar
Sommer, S, Marckmann, G, Pentzek, M, Wegscheider, K, Abholz, H and in der Schmitten, J (2012) Advance directives in nursing homes: prevalence, validity, significance, and nursing staff adherence. Deutsches Ärzteblatt International 37, 577–583.Google Scholar
Timonen, V (2016) Beyond Successful and Active Ageing: A Theory of Model Ageing. Bristol, UK: Policy Press.Google Scholar
van der Maaden, T, Hendriks, SA, de Vet, HC, Zomerhuis, MT, Smalbrugge, M, Jansma, EP, Koopmans, RT, Hertogh, CM and van der Steen, JT (2015) Antibiotic use and associated factors in patients with dementia: a systematic review. Drugs & Aging 32, 43–56.Google Scholar
van der Steen, JT, Radbruch, L, Hertogh, CM, de Boer, ME, Hughes, JC, Larkin, P, Francke, AL, Jünger, S, Gove, D, Firth, P and Koopmans, RT (2014) White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care. Palliative Medicine 28, 197–209.Google Scholar
Vandervoort, A, Van den Block, L, van der Steen, JT, Vander Stichele, R, Bilsen, J and Deliens, L (2012) Advance directives and physicians’ orders in nursing home residents with dementia in Flanders, Belgium: prevalence and associated outcomes. International Psychogeriatrics 24, 1133–1143.Google Scholar
Volandes, AE, Lehmann, LS, Cook, EF, Shaykevich, S, Abbo, ED and Gillick, MR (2007) Using video images of dementia in advance care planning. Archives of Internal Medicine 167, 828–833.Google Scholar
Wadham, O, Simpson, J, Rust, J and Murray, C (2016) Couples’ shared experiences of dementia: a meta-synthesis of the impact upon relationships and couplehood. Aging & Mental Health 20, 463–473.Google Scholar
Wiersma, EC, O'Connor, DL, Loiselle, L, Hickman, K, Heibein, B, Hounam, B and Mann, J (2016) Creating space for citizenship: the impact of group structure on validating the voices of people with dementia. Dementia 15, 414–433.Google Scholar