2,423
Views
12
CrossRef citations to date
0
Altmetric
Research papers

A grounded theory study to identify caregiving phases and support needs across the Alzheimer’s disease trajectory

ORCID Icon, ORCID Icon, ORCID Icon, ORCID Icon, ORCID Icon, ORCID Icon & ORCID Icon show all
Pages 1050-1059 | Received 17 Nov 2019, Accepted 24 Jun 2020, Published online: 20 Jul 2020

References

  • Chertkow H, Feldman HH, Jacova C, et al. Definitions of dementia and predementia states in Alzheimer's disease and vascular cognitive impairment: consensus from the Canadian conference on diagnosis of dementia. Alzheimer’s Res Ther. 2013;5(1):1–8.
  • Plassman BL, Langa KM, McCammon RJ, et al. Incidence of dementia and cognitive impairment, not dementia in the United States. Ann Neurol. 2011;70(3):418–426.
  • Uddin MS. Ashraf GM. Introductory Chapter Alzheimer’s disease—the most common cause of dementia. London: Advances in Dementia Research: IntechOpen; 2018.
  • Prizer LP, Zimmerman S. Progressive support for activities of daily living for persons living with dementia. Gerontologist. 2018;58(suppl_1):S74–S87.
  • Giebel CM, Sutcliffe C, Challis D. Activities of daily living and quality of life across different stages of dementia: a UK study. Aging Ment Health. 2015;19(1):63–71.
  • Perneczky R, Wagenpfeil S, Komossa K, et al. Mapping scores onto stages: mini-mental state examination and clinical dementia rating. Am J Geriat Psychiat. 2006;14(2):139–144.
  • Xie J, Brayne C, Matthews FE. Survival times in people with dementia: analysis from population based cohort study with 14 year follow-up. BMJ. 2008;336(7638):258–262.
  • Davis M, O Connell T, Johnson S, et al. Estimating Alzheimer’s disease progression rates from normal cognition through mild cognitive impairment and stages of dementia. Curr Alzheimer Res. 2018;15(8):777–788.
  • MoHaLT C. Thriving at home: a levls of care framework to improve the quality and consistency of home and community care for Ontarians. Office of the Minister; 2017.
  • Roth DL, Fredman L, Haley WE. Informal caregiving and its impact on health: a reappraisal from population-based studies. Gerontologist. 2015;55(2):309–319.
  • von Känel R, Mausbach BT, Dimsdale JE, et al. Refining caregiver vulnerability for clinical practice: determinants of self-rated health in spousal dementia caregivers. BMC Geriatr. 2019;19(1):18.
  • Richardson TJ, Lee SJ, Berg-Weger M, et al. Caregiver health: health of caregivers of Alzheimer's and other dementia patients. Curr Psychiatry Rep. 2013;15(7):367.
  • Pinquart M, Sörensen S. Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis. Psychol Aging. 2003;18(2):250–267.
  • Chiao CY, Wu HS, Hsiao CY. Caregiver burden for informal caregivers of patients with dementia: a systematic review. Int Nurs Rev. 2015;62(3):340–350.
  • Armstrong NM, Gitlin LN, Parisi JM, et al. Association of physical functioning of persons with dementia with caregiver burden and depression in dementia caregivers: an integrative data analysis. Aging Ment Health. 2019;23(5):587–594.
  • Swartz K, Collins LG. Caregiver care. Am Fam Physician. 2019;99(11):699–706.
  • Pinquart M, Sörensen S. Spouses, adult children, and children-in-law as caregivers of older adults: a meta-analytic comparison. Psychol Aging. 2011;26(1):1–14.
  • Gibson AK, Anderson KA, Acocks S. Exploring the service and support needs of families with early-onset Alzheimer’s disease. Am J Alzheimers Dis Other Demen. 2014;29(7):596–600.
  • Sutcliffe CL, Roe B, Jasper R, et al. People with dementia and carers’ experiences of dementia care and services: outcomes of a focus group study. Dementia. 2015;14(6):769–787.
  • Peeters JM, Van Beek AP, Meerveld JH, et al. Informal caregivers of persons with dementia, their use of and needs for specific professional support: a survey of the National Dementia Programme. BMC Nurs. 2010;9(1):9.
  • Steiner V, Pierce LL, Salvador D. Information needs of family caregivers of people with dementia. Rehabil Nurs. 2016;41(3):162–169.
  • Tanner JA, Black BS, Johnston D, et al. A randomized controlled trial of a community-based dementia care coordination intervention: effects of MIND at Home on caregiver outcomes. Am J Geriatr Psychiatry. 2015;23(4):391–402.
  • Zwingmann I, Hoffmann W, Michalowsky B, et al. Supporting family dementia caregivers: testing the efficacy of dementia care management on multifaceted caregivers’ burden. Aging Ment Health. 2018;22(7):889–896.
  • Vaingankar JA, Subramaniam M, Picco L, et al. Perceived unmet needs of informal caregivers of people with dementia in Singapore. Int Psychogeriatr. 2013;25(10):1605–1619.
  • Zwingmann I, Michalowsky B, Esser A, et al. Identifying unmet needs of family dementia caregivers: results of the baseline assessment of a cluster-randomized controlled intervention trial. J Alzheimers Dis. 2019;67(2):527–513.
  • Ying J, Wang Y, Zhang M, et al. Effect of multicomponent interventions on competence of family caregivers of people with dementia: a systematic review. J Clin Nurs. 2018;27(9–10):1744–1758.
  • Dam AE, de Vugt ME, Klinkenberg IP, et al. A systematic review of social support interventions for caregivers of people with dementia: are they doing what they promise? Maturitas. 2016;85:117–130.
  • Thompson CA, Spilsbury K, Hall J, et al. Systematic review of information and support interventions for caregivers of people with dementia. BMC Geriatr. 2007;7(1):18.
  • Vandepitte S, Van Den Noortgate N, Putman K, et al. Effectiveness of respite care in supporting informal caregivers of persons with dementia: a systematic review. Int J Geriatr Psychiatry. 2016;31(12):1277–1288.
  • Montgomery RJ, Kosloski KD. Pathways to a caregiver identity and implications for support services. Caregiving across the Lifespan. New York: Springer; 2013. p. 131–156.
  • Corbin JM, Strauss A. A nursing model for chronic illness management based upon the trajectory framework. Sch Inq Nurs Pract. 1991;5(3):155–174.
  • Czerwonka AI, Herridge MS, Chan L, et al. Changing support needs of survivors of complex critical illness and their family caregivers across the care continuum: a qualitative pilot study of Towards RECOVER. J Crit Care. 2015;30(2):242–249.
  • Cameron JI, Gignac MA. “Timing It Right”: a conceptual framework for addressing the support needs of family caregivers to stroke survivors from the hospital to the home”. Patient Educ Couns. 2008;70(3):305–314.
  • Cameron JI, Naglie G, Silver FL, et al. Stroke family caregivers’ support needs change across the care continuum: a qualitative study using the timing it right framework. Disabil Rehabil. 2013;35(4):315–324.
  • Cameron JI, Naglie G, Green TL, et al. A feasibility and pilot randomized controlled trial of the “Timing it right stroke family support program”. Clin Rehabil. 2015;29(11):1129–1140.
  • Lee CM, Herridge MS, Matte A, et al. Education and support needs during recovery in acute respiratory distress syndrome survivors. Crit Care. 2009;13(5):R153.
  • DiZazzo-Miller R, Pociask FD, Samuel P. Understanding resource needs of persons with dementia and their caregivers. Michigan Family Review. 2013;17(1):1-20. 
  • Kurz A, Wagenpfeil S, Hallauer J, et al. Evaluation of a brief educational program for dementia carers: the AENEAS study. Int J Geriatr Psychiatry. 2010;25(8):861–869.
  • Zwaanswijk M, Peeters JM, Van Beek AP, et al. Informal caregivers of people with dementia: problems, needs and support in the initial stage and in subsequent stages of dementia: a questionnaire survey. Open Nurs J. 2013;7:6–13.
  • Montgomery RJV, Kosloski KD. Family caregiving: change, continuity, and diversity. Interventions in dementia care: toward improving quality of life. New York: Springer; 2000. p. 143–171.
  • Nolan M, Grant G, Keady J. Understanding family care: a multidimensional model of caring and coping. Bristol (PA): Open University; 1996.
  • Boots LM, Wolfs CA, Verhey FR, et al. Qualitative study on needs and wishes of early-stage dementia caregivers: the paradox between needing and accepting help. Int Psychogeriatr. 2015;27(6):927–936.
  • Charmaz K. Constructing grounded theory: a practical guide through qualitative analysis. London, Thousand Oaks: SAGE; 2006.
  • Patton MQ. Qualitative research & evaluation methods: integrating theory and practice. 4th ed. Thousand Oaks (CA): SAGE Publications, Inc; 2015.
  • Cohen S. Stress, social support, and disorder. The meaning and measurement of social support. 1992;109:124.
  • Bazeley P, Jackson K. Qualitative data analysis with NVivo. London: Sage Publications Limited; 2013.
  • Koch T. Establishing rigour in qualitative research: the decision trail. J Adv Nurs. 2006;53(1):91–100.
  • Aneshensel CS, Pearlin LI, Mullan JT, et al. Profiles in caregiving: the unexpected career. San Diego: Elsevier; 1995.
  • Jensen M, Agbata IN, Canavan M, et al. Effectiveness of educational interventions for informal caregivers of individuals with dementia residing in the community: systematic review and meta-analysis of randomised controlled trials . Int J Geriatr Psychiatry. 2015;30(2):130–143.
  • Whitlatch CJ, Orsulic-Jeras S. Meeting the informational, educational, and psychosocial support needs of persons living with dementia and their family caregivers. Gerontologist. 2018;58(suppl_1):S58–S73.
  • Moore KJ, Lee CY, Sampson EL, et al. Do interventions that include education on dementia progression improve knowledge, mental health and burden of family carers? A systematic review. Dementia. 2019. DOI:https://doi.org/10.1177/1471301219831530
  • Johnson RA, Schwiebert VB, Rosenmann PA. Factors influencing nursing home placement decisions: the older adult’s perspective. Clin Nurs Res. 1994;3(3):269–281.
  • Sörensen S, Chapman BP, Duberstein PR, et al. Assessing future care preparation in late life: two short measures. Psychol Assess. 2017;29(12):1480–1495.
  • Dellasega C, Mastrian K, Weinert C. The process and consequences of institutionalizing an elder. West J Nurs Res. 1995;17(2):123–140.
  • Nolan M, Dellasega C. ‘I really feel I’ve let him down’: supporting family carers during long-term care placement for elders . J Adv Nurs. 2000;31(4):759–767.
  • Bramble M, Moyle W, McAllister M. Seeking connection: family care experiences following long-term dementia care placement. J Clin Nurs. 2009;18(22):3118–3125.
  • Davis JD, Tremont G, Bishop DS, et al. A telephone-delivered psychosocial intervention improves dementia caregiver adjustment following nursing home placement. Int J Geriat Psychiatry. 2011;26(4):380–387.
  • Rose KM, Lopez RP. Transitions in dementia care: theoretical support for nursing roles. Online J Issues Nurs. 2012;17(2):4.
  • Schulz R, Rosen J, Klinger J, et al. Effects of a psychosocial intervention on caregivers of recently placed nursing home residents: a randomized controlled trial. Clin Gerontol. 2014;37(4):347–367.
  • Brooks D, Fielding E, Beattie E, et al. Effectiveness of psychosocial interventions on the psychological health and emotional well-being of family carers of people with dementia following residential care placement: a systematic review. JBI Database System Rev Implement Rep. 2018;16(5):1240–1268.
  • Novick G. Is there a bias against telephone interviews in qualitative research? Res Nurs Health. 2008;31(4):391–398.

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.