1,302
Views
0
CrossRef citations to date
0
Altmetric
Dementia Care

I want to be seen as myself: needs and perspectives of persons with dementia concerning collaboration and a possible future move to the nursing home in palliative dementia care

, , , , &
Pages 2410-2419 | Received 08 Aug 2022, Accepted 11 May 2023, Published online: 24 Jun 2023

References

  • Aaltonen, M., Raitanen, J., Forma, L., Pulkki, J., Rissanen, P., & Jylha, M. (2014). Burdensome transitions at the end of life among long-term care residents with dementia. Journal of the American Medical Directors Association, 15(9), 643–648. https://doi.org/10.1016/j.jamda.2014.04.018
  • Aminzadeh, F., Dalziel, W. B., Molnar, F. J., & Garcia, L. J. (2010). Meanings, functions, and experiences of living at home for individuals with dementia at the critical point of relocation. Journal of Gerontological Nursing, 36(6), 28–35. https://doi.org/10.3928/00989134-20100303-02
  • Aminzadeh, F., Dalziel, W. B., Molnar, F. J., & Garcia, L. J. (2009). Symbolic meaning of relocation to a residential care facility for persons with dementia. Aging & Mental Health, 13(3), 487–496. https://doi.org/10.1080/13607860802607314
  • Ashbourne, J., Boscart, V., Meyer, S., Tong, C. E., & Stolee, P. (2021). Health care transitions for persons living with dementia and their caregivers. BMC Geriatrics, 21(1), 285. https://doi.org/10.1186/s12877-021-02235-5
  • Assarroudi, A., Heshmati Nabavi, F., Armat, M. R., Ebadi, A., & Vaismoradi, M. (2018). Directed qualitative content analysis: The description and elaboration of its underpinning methods and data analysis process. Journal of Research in Nursing: JRN, 23(1), 42–55. https://doi.org/10.1177/1744987117741667
  • AWO. (2017). DEDICATED: Desired dementia care towards end of life. The living lab in ageing and long-term care. https://awo.mumc.maastrichtuniversity.nl/dedicated-desired-dementia-care-towards-end-life
  • Bavelaar, L., Steen, H. T. A., Jong, H., Carter, G., Brazil, K., Achterberg, W., & van der Steen, J. (2021). Physicians’ perceived barriers and proposed solutions for high-quality palliative care in dementia in the Netherlands: Qualitative analysis of survey data. The Journal of Nursing Home Research Sciences, 7, 23–31. https://doi.org/10.14283/jnhrs.2021.5
  • Beard, R., Knauss, J., & Moyer, D. (2009). Managing disability and enjoying life: How we reframe dementia through personal narratives. Journal of Aging Studies, 23(4), 227–235. https://doi.org/10.1016/j.jaging.2008.01.002
  • Beernaert, K., Deliens, L., Vleminck, A., Devroey, D., Pardon, K., Van den Block, L., & Cohen, J. (2016). Is there a need for early palliative care in patients with life-limiting illnesses? Interview study with patients about experienced care needs from diagnosis onward. American Journal of Hospice and Palliative Medicine®, 33(5), 489–497. https://doi.org/10.1177/1049909115577352
  • Boddaert, M., Douma, J., Dijxhoorn, F., & Bijkerk, M. (2017). Netherlands quality framework for palliative care. IKNL/Palliactief.
  • Bolt, S. R., van der Steen, J. T., Khemai, C., Schols, J., Zwakhalen, S. M. G., & Meijers, J. M. M. (2022). The perspectives of people with dementia on their future, end of life and on being cared for by others: A qualitative study. Journal of Clinical Nursing, 31(13–14), 1738–1752. https://doi.org/10.1111/jocn.15644
  • Bosisio, F., Jox, R., Jones, L., & Truchard, E. (2018). Planning ahead with dementia: What role can advance care planning play? A review on opportunities and challenges. Swiss Medical Weekly, 148, 1–9. https://doi.org/10.4414/smw.2018.14706
  • Bradway, C., Trotta, R., Bixby, M. B., McPartland, E., Wollman, M. C., Kapustka, H., McCauley, K., & Naylor, M. D. (2012). A qualitative analysis of an advanced practice nurse-directed transitional care model intervention. The Gerontologist, 52(3), 394–407. https://doi.org/10.1093/geront/gnr078
  • Brownie, S., Horstmanshof, L., & Garbutt, R. (2014). Factors that impact residents’ transition and psychological adjustment to long-term aged care: A systematic literature review. International Journal of Nursing Studies, 51(12), 1654–1666. https://doi.org/10.1016/j.ijnurstu.2014.04.011
  • Callahan, C. M., Arling, G., Tu, W., Rosenman, M. B., Counsell, S. R., Stump, T. E., & Hendrie, H. C. (2012). Transitions in care for older adults with and without dementia. Journal of the American Geriatrics Society, 60(5), 813–820. https://doi.org/10.1111/j.1532-5415.2012.03905.x
  • Carter, N., Bryant-Lukosius, D., DiCenso, A., Blythe, J., & Neville, A. J. (2014). The use of triangulation in qualitative research. Oncology Nursing Forum, 41(5), 545–547. https://doi.org/10.1188/14.ONF.545-547
  • Cater, D., Tunalilar, O., White, D. L., Hasworth, S., & Winfree, J. (2022). “Home is Home:” exploring the meaning of home across long-term care settings. Journal of Aging and Environment, 36(3), 321–338. https://doi.org/10.1080/26892618.2021.1932012
  • Dahlke, S., Meherali, S., Chambers, T., Freund-Heritage, R., Steil, K., & Wagg, A. (2017). The care of older adults experiencing cognitive challenges: how interprofessional teams collaborate. Canadian Journal on Aging = La Revue Canadienne du Vieillissement, 36(4), 485–500. https://doi.org/10.1017/S0714980817000368
  • Dahlke, S., Steil, K., Freund-Heritage, R., Colborne, M., Labonte, S., & Wagg, A. (2018). Older people and their families’ perceptions about their experiences with interprofessional teams. Nursing Open, 5(2), 158–166. https://doi.org/10.1002/nop2.123
  • Daly, R. L., Bunn, F., & Goodman, C. (2018). Shared decision-making for people living with dementia in extended care settings: A systematic review. BMJ Open, 8(6), e018977. https://doi.org/10.1136/bmjopen-2017-018977
  • Davies, K., & Steen, v. d. (2018). Palliative care in dementia. In R. D. MacLeod & L. Van den Block (Eds.), Textbook of palliative care (pp. 1–23). Springer International Publishing. https://doi.org/10.1007/978-3-319-31738-0_113-1
  • Davies, M., Zúñiga, F., Verbeek, H., Simon, M., & Staudacher, S. (2022). Exploring interrelations between person-centred care and quality of life following a transition into long-term residential care: A meta-ethnography. Gerontologist, 63(4), 660–673. https://doi.org/10.1093/geront/gnac027
  • Davies, N., Maio, L., Vedavanam, K., Manthorpe, J., Vernooij-Dassen, M., & Iliffe, S., IMPACT Research Team. (2014). Barriers to the provision of high-quality palliative care for people with dementia in England: A qualitative study of professionals’ experiences. Health & Social Care in the Community, 22(4), 386–394. https://doi.org/10.1111/hsc.12094
  • Davison, T. E., Camões-Costa, V., & Clark, A. (2019). Adjusting to life in a residential aged care facility: Perspectives of people with dementia, family members and facility care staff. Journal of Clinical Nursing, 28(21-22), 3901–3913. https://doi.org/10.1111/jocn.14978
  • de Jong, J. D., & Boersma, F. (2009). Dutch psychogeriatric day-care centers: A qualitative study of the needs and wishes of carers. International Psychogeriatrics, 21(2), 268–277. https://doi.org/10.1017/s1041610208008247
  • de Witt, L., Ploeg, J., & Black, M. (2010). Living alone with dementia: An interpretive phenomenological study with older women. Journal of Advanced Nursing, 66(8), 1698–1707. https://doi.org/10.1111/j.1365-2648.2010.05295.x
  • Dupuis, S. L., Gillies, J., Carson, J., Whyte, C., Genoe, M., Loiselle, L., & Sadler, L. (2012). Moving beyond ‘patient’ and ‘client’ approaches: Mobilising authentic partnerships in dementia care. Dementia, 11(4), 427–452. https://doi.org/10.1177/1471301211421063
  • Durand, F., & Fleury, M.-J. (2021). A multilevel study of patient-centered care perceptions in mental health teams. BMC Health Services Research, 21(1), 44. https://doi.org/10.1186/s12913-020-06054-z
  • Eisenmann, Y., Golla, H., Schmidt, H., Voltz, R., & Perrar, K. M. (2020). Palliative care in advanced dementia [review]. Frontiers in Psychiatry, 11, 699. https://doi.org/10.3389/fpsyt.2020.00699
  • Elo, S., & Kyngas, H. (2008). The qualitative content analysis process. Journal of Advanced Nursing, 62(1), 107–115. https://doi.org/10.1111/j.1365-2648.2007.04569.x
  • Elo, S., Kääriäinen, M., Kanste, O., Pölkki, T., Utriainen, K., & Kyngäs, H. (2014). Qualitative content analysis: A focus on trustworthiness. Sage Open, 4(1), 215824401452263. https://doi.org/10.1177/2158244014522633
  • Erlingsson, C., & Brysiewicz, P. (2017). A hands-on guide to doing content analysis. African Journal of Emergency Medicine: Revue Africaine de la Medecine D’urgence, 7(3), 93–99. https://doi.org/10.1016/j.afjem.2017.08.001
  • Etikan, I. (2016). Comparison of convenience sampling and purposive sampling. American Journal of Theoretical and Applied Statistics, 5(1), 1. https://doi.org/10.11648/j.ajtas.20160501.11
  • Etikan, İ., & Babatope, O. (2019). A basic approach in sampling methodology and sample size calculation. Medlife Clinics, 1, 50–54.
  • Fetterolf, M. (2015). Personhood-based dementia care: Using the familial caregiver as a bridging model for professional caregivers. Anthropology & Aging, 36(1), 82–100. https://doi.org/10.5195/aa.2015.84
  • Frank, C., & Forbes, R. (2017). A patient’s experience in dementia care. Canadian Family Physician, 63, 22–26.
  • Galvin, J. E., Valois, L., & Zweig, Y. (2014). Collaborative transdisciplinary team approach for dementia care. Neurodegenerative Disease Management, 4(6), 455–469. https://doi.org/10.2217/nmt.14.47
  • Garvelink, M. M., Groen-van de Ven, L., Smits, C., Franken, R., Dassen-Vernooij, M., & Légaré, F. (2019). Shared decision making about housing transitions for persons with dementia: A four-case care network perspective. The Gerontologist, 59(5), 822–834. https://doi.org/10.1093/geront/gny073
  • Geldmacher, D. S., Frolich, L., Doody, R. S., Erkinjuntti, T., Vellas, B., Jones, R. W., Banerjee, S., Lin, P., & Sano, M. (2006). Realistic expectations for treatment success in Alzheimer’s disease. J Nutr Health Aging, 10(5), 417–429.
  • Gill, S. S. C. X., & Poss, J. W. (2011). Community dwelling older adults with dementia. Health system use by frail Ontario seniors: An in-depth examination of four vulnerable cohorts (S. C. S. E. Bronskill, A. Gruneir, & M. M. Ho, Eds.). Institute for Clinical Evaluative Sciences.
  • Groenvynck, L., de Boer, B., Hamers, J. P. H., van Achterberg, T., van Rossum, E., & Verbeek, H. (2021). Toward a Partnership in the transition from Home to a Nursing Home: The TRANSCIT Model. Journal of the American Medical Directors Association, 22(2), 351–356. https://doi.org/10.1016/j.jamda.2020.09.041
  • Groenvynck, L., Fakha, A., de Boer, B., Hamers, J. P. H., van Achterberg, T., van Rossum, E., & Verbeek, H. (2022). Interventions to improve the transition from home to a nursing home: A scoping review. The Gerontologist, 62(7), e369–e383. https://doi.org/10.1093/geront/gnab036
  • Guthrie, B., Payne, K., Alderson, P., McMurdo, M. E. T., & Mercer, S. W. (2012). Adapting clinical guidelines to take account of multimorbidity. BMJ (Clinical Research ed.), 345, e6341. https://doi.org/10.1136/bmj.e6341
  • Hirschman, K. B., & Hodgson, N. A. (2018). Evidence-based interventions for transitions in care for individuals living with dementia. The Gerontologist, 58(suppl_1), S129–S140. https://doi.org/10.1093/geront/gnx152
  • Hoek, L. J. M., Verbeek, H., de Vries, E., van Haastregt, J. C. M., Backhaus, R., & Hamers, J. P. H. (2020). Autonomy support of nursing home residents with dementia in staff-resident interactions: Observations of care. Journal of the American Medical Directors Association, 21(11), 1600–1608.e2. https://doi.org/10.1016/j.jamda.2020.04.013
  • Hoek, L. J., van Haastregt, J. C., de Vries, E., Backhaus, R., Hamers, J. P., & Verbeek, H. (2021). Partnerships in nursing homes: How do family caregivers of residents with dementia perceive collaboration with staff? Dementia (London), 20(5), 1631–1648. 1471301220962235. https://doi.org/10.1177/1471301220962235
  • Hydén, L.-C. (2014). Cutting Brussels sprouts: Collaboration involving persons with dementia. Journal of Aging Studies, 29, 115–123. https://doi.org/10.1016/j.jaging.2014.02.004
  • Jarrett, N. (2009). Patients’ experiences of inter-and intra-professional communication (IIPC) in the specialist palliative care context. International Journal on Disability and Human Development, 8(1), 51–58. https://doi.org/10.1515/IJDHD.2009.8.1.51
  • Johnson. (2013). Relocation stress syndrome. Nursing diagnosis handbook: An evidence-based guide to planning care (B. L. Ackley, G., Ed. 10th ed.). Mosby Elsevier.
  • Kramer, J. H., & Duffy, J. M. (1996). Aphasia, apraxia, and agnosia in the diagnosis of dementia. Dementia (Basel, Switzerland), 7(1), 23–26. https://doi.org/10.1159/000106848
  • Legare, F., Stacey, D., Briere, N., Robitaille, H., Lord, M. C., Desroches, S., & Drolet, R. (2014). An interprofessional approach to shared decision making: An exploratory case study with family caregivers of one IP home care team. BMC Geriatrics, 14(1), 83. https://doi.org/10.1186/1471-2318-14-83
  • Lethin, C., Rahm Hallberg, I., Vingare, E. L., & Giertz, L. (2019). Persons with dementia living at home or in nursing homes in nine Swedish urban or rural municipalities. Healthcare (Basel), 7(2), 80. https://doi.org/10.3390/healthcare7020080
  • Lord, K., Livingston, G., Robertson, S., & Cooper, C. (2016). How people with dementia and their families decide about moving to a care home and support their needs: Development of a decision aid, a qualitative study. BMC Geriatrics, 16(1), 68. https://doi.org/10.1186/s12877-016-0242-1
  • McDonald, K. M., Sundaram, V., Bravata, D. M., Lewis, R., Lin, N., Kraft, S. A., McKinnon, M., Paguntalan, H., & Owens, D. K. (2007). AHRQ technical reviews. In Closing the quality gap: A critical analysis of quality improvement strategies (Vol. 7: Care coordination). Agency for Healthcare Research and Quality (US).
  • McInerney, F., Doherty, K., Bindoff, A., Robinson, A., & Vickers, J. (2018). How is palliative care understood in the context of dementia? Results from a massive open online course. Palliative Medicine, 32(3), 594–602. https://doi.org/10.1177/0269216317743433
  • Miller, L. M., Whitlatch, C. J., & Lyons, K. S. (2016). Shared decision-making in dementia: A review of patient and family carer involvement. Dementia (London, England), 15(5), 1141–1157. https://doi.org/10.1177/1471301214555542
  • Milte, R., Shulver, W., Killington, M., Bradley, C., Ratcliffe, J., & Crotty, M. (2016). Quality in residential care from the perspective of people living with dementia: The importance of personhood. Archives of Gerontology and Geriatrics, 63, 9–17. https://doi.org/10.1016/j.archger.2015.11.007
  • Mjørud, M., Engedal, K., Røsvik, J., & Kirkevold, M. (2017). Living with dementia in a nursing home, as described by persons with dementia: A phenomenological hermeneutic study. BMC Health Services Research, 17(1), 93. https://doi.org/10.1186/s12913-017-2053-2
  • Nakanishi, M., Endo, K., Hirooka, K., Granvik, E., Minthon, L., Nägga, K., & Nishida, A. (2018). Psychosocial behaviour management programme for home-dwelling people with dementia: A cluster-randomized controlled trial. International Journal of Geriatric Psychiatry, 33(3), 495–503. https://doi.org/10.1002/gps.4784
  • Parry, C., Coleman, E. A., Smith, J. D., Frank, J., & Kramer, A. M. (2003). The care transitions intervention: A patient-centered approach to ensuring effective transfers between sites of geriatric care. Home Health Care Services Quarterly, 22(3), 1–17. https://doi.org/10.1300/J027v22n03_01
  • Perrar, K. M., Schmidt, H., Eisenmann, Y., Cremer, B., & Voltz, R. (2015). Needs of people with severe dementia at the end-of-life: A systematic review. Journal of Alzheimer’s Disease: JAD, 43(2), 397–413. https://doi.org/10.3233/jad-140435
  • Poole, M., Bamford, C., McLellan, E., Lee, R. P., Exley, C., Hughes, J. C., Harrison-Dening, K., & Robinson, L. (2018). End-of-life care: A qualitative study comparing the views of people with dementia and family carers. Palliative Medicine, 32(3), 631–642. https://doi.org/10.1177/0269216317736033
  • Powers, S. M., Dawson, N. T., Krestar, M. L., Yarry, S. J., & Judge, K. S. (2016). I wish they would remember that I forget:’ The effects of memory loss on the lives of individuals with mild-to-moderate dementia. Dementia (London, England), 15(5), 1053–1067. https://doi.org/10.1177/1471301214553236
  • Prince, M., Prina, M., & Guerchet, M. (2013). World Alzheimer Report 2013. Journey of Caring: An analysis of long-term care for dementia. https://www.researchgate.net/publication/257482065
  • Prorok, J. C., Horgan, S., & Seitz, D. P. (2013). Health care experiences of people with dementia and their caregivers: A meta-ethnographic analysis of qualitative studies. CMAJ: Canadian Medical Association Journal = Journal de L’Association Medicale Canadienne, 185(14), E669–680. https://doi.org/10.1503/cmaj.121795
  • Radbruch, L., De Lima, L., Knaul, F., Wenk, R., Ali, Z., Bhatnaghar, S., Blanchard, C., Bruera, E., Buitrago, R., Burla, C., Callaway, M., Munyoro, E. C., Centeno, C., Cleary, J., Connor, S., Davaasuren, O., Downing, J., Foley, K., Goh, C., … Pastrana, T. (2020). Redefining palliative care-A new consensus-based definition. Journal of Pain and Symptom Management, 60(4), 754–764. https://doi.org/10.1016/j.jpainsymman.2020.04.027
  • Radue, R., Walaszek, A., & Asthana, S. (2019). Neuropsychiatric symptoms in dementia. Handbook Clinical Neurology, 167, 437–454. https://doi.org/10.1016/b978-0-12-804766-8.00024-8
  • Rait, G., Walters, K., Bottomley, C., Petersen, I., Iliffe, S., & Nazareth, I. (2010). Survival of people with clinical diagnosis of dementia in primary care: Cohort study. BMJ (Clinical Research ed.), 341, c3584. https://doi.org/10.1136/bmj.c3584
  • Reed, P., Carson, J., & Gibb, Z. (2017). Transcending the tragedy discourse of dementia: An ethical imperative for promoting selfhood, meaningful relationships, and well-being. AMA Journal of Ethics, 19, 693–703. https://doi.org/10.1001/journalofethics.2017.19.7.msoc1-1707
  • Rokstad, A. M. M., McCabe, L., Robertson, J. M., Strandenæs, M. G., Tretteteig, S., & Vatne, S. (2019). Day care for people with dementia: A qualitative study comparing experiences from Norway and Scotland. Dementia (London, England), 18(4), 1393–1409. https://doi.org/10.1177/1471301217712796
  • Ryan, T., Gardiner, C., Bellamy, G., Gott, M., & 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(7), 879–886. https://doi.org/10.1177/0269216311423443
  • Samsi, K., & Manthorpe, J. (2013). Everyday decision-making in dementia: Findings from a longitudinal interview study of people with dementia and family carers. International Psychogeriatrics, 25(6), 949–961. https://doi.org/10.1017/s1041610213000306
  • Samus, Q. M., Johnston, D., Black, B. S., Hess, E., Lyman, C., Vavilikolanu, A., Pollutra, J., Leoutsakos, J.-M., Gitlin, L. N., Rabins, P. V., & Lyketsos, C. G. (2014). A multidimensional home-based care coordination intervention for elders with memory disorders: The maximizing independence at home (MIND) pilot randomized trial. The American Journal of Geriatric Psychiatry: Official Journal of the American Association for Geriatric Psychiatry, 22(4), 398–414. https://doi.org/10.1016/j.jagp.2013.12.175
  • Shiells, K., Pivodic, L., Holmerova, I., & Van den Block, L. (2020). Self-reported needs and experiences of people with dementia living in nursing homes: A scoping review. Aging & Mental Health, 24(10), 1553–1568. https://doi.org/10.1080/13607863.2019.1625303
  • Smebye, K. L., & Kirkevold, M. (2013). The influence of relationships on personhood in dementia care: A qualitative, hermeneutic study. BMC Nursing, 12(1), 29. https://doi.org/10.1186/1472-6955-12-29
  • Smith, G. E., Kokmen, E., & O’Brien, P. C. (2000). Risk factors for nursing home placement in a population-based dementia cohort. Journal of the American Geriatrics Society, 48(5), 519–525. https://doi.org/10.1111/j.1532-5415.2000.tb04998.x
  • Stephan, A., Bieber, A., Hopper, L., Joyce, R., Irving, K., Zanetti, O., Portolani, E., Kerpershoek, L., Verhey, F., de Vugt, M., Wolfs, C., Eriksen, S., Rosvik, J., Marques, M. J., Goncalves-Pereira, M., Sjolund, B. M., Jelley, H., Woods, B., & Meyer, G, on behalf of the Actifcare Consortium. (2018). Barriers and facilitators to the access to and use of formal dementia care: Findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries. BMC Geriatrics, 18(1), 131. https://doi.org/10.1186/s12877-018-0816-1
  • Sternberg, S. A., Sabar, R., Katz, G., Segal, R., Fux-Zach, L., Grofman, V., Roth, G., Cohen, N., Radomyslaski, Z., & Bentur, N. (2019). Home hospice for older people with advanced dementia: A pilot project. Israel Journal of Health Policy Research, 8(1), 42. https://doi.org/10.1186/s13584-019-0304-x
  • Street, D., & Burge, S. W. (2012). Residential context, social relationships, and subjective well-being in assisted living. Research on Aging, 34(3), 365–394. https://doi.org/10.1177/0164027511423928
  • Thein, N. W., D’Souza, G., & Sheehan, B. (2011). Expectations and experience of moving to a care home: Perceptions of older people with dementia. Dementia, 10(1), 7–18. https://doi.org/10.1177/1471301210392971
  • Tong, A., Sainsbury, P., & Craig, J. (2007). Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care: Journal of the International Society for Quality in Health Care, 19(6), 349–357. https://doi.org/10.1093/intqhc/mzm042
  • van der Steen, J. T., Radbruch, L., Hertogh, C. M. P. M., de Boer, M. E., Hughes, J. C., Larkin, P., Francke, A. L., Jünger, S., Gove, D., Firth, P., Koopmans, R. T. C. M., & Volicer, L., European Association for Palliative Care (EAPC). (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(3), 197–209. https://doi.org/10.1177/0269216313493685
  • van der Steen, J. T., van Soest-Poortvliet, M. C., Achterberg, W. P., Ribbe, M. W., & De Vet, H. C. W. (2011). Family perceptions of wishes of dementia patients regarding end-of-life care. International Journal of Geriatric Psychiatry, 26(2), 217–220. https://doi.org/10.1002/gps.2577
  • van der Steen, J. T., van Soest-Poortvliet, M. C., Hallie-Heierman, M., Onwuteaka-Philipsen, B. D., Deliens, L., de Boer, M. E., Van den Block, L., van Uden, N., Hertogh, C. M., & de Vet, H. C. (2014). Factors associated with initiation of advance care planning in dementia: A systematic review. Journal of Alzheimer’s Disease, 40(3), 743–757. https://doi.org/10.3233/JAD-131967
  • van Egdom, G. (1997). Housing for the elderly in the Netherlands: A care problem. Ageing International, 23(3–4), 165–182. https://doi.org/10.1007/s12126-997-1012-3
  • van Hoof, J., Verbeek, H., Janssen, B. M., Eijkelenboom, A., Molony, S. L., Felix, E., Nieboer, K. A., Zwerts-Verhelst, E. L., Sijstermans, J. J., & Wouters, E. J. (2016). A three perspective study of the sense of home of nursing home residents: The views of residents, care professionals and relatives. BMC Geriatrics, 16(1), 169. https://doi.org/10.1186/s12877-016-0344-9
  • Whitlatch, C., & Orsulic-Jeras, S. (2018). Meeting the informational, educational, and psychosocial support needs of persons living with dementia and their family caregivers. Gerontologist, 58, S58–S73. https://doi.org/10.1093/geront/gnx162
  • WHO. (2010). Framework for action on interprofessional education & collaborative practice. http://www.who.int/iris/handle/10665/70185
  • WMA. (2013). Declaration of Helsinki: Ethical principles for medical research involving human subjects. JAMA, 310(20), 2191–2194. https://doi.org/10.1001/jama.2013.281053
  • Young, J. A., Lind, C., & Orange, J. (2021). A qualitative systematic review of experiences of persons with dementia regarding transition to long-term care. Dementia, 20(1), 5–27. https://doi.org/10.1177/1471301219862439
  • Zahradnik, E. K., & Grossman, H. (2014). Palliative care as a primary therapeutic approach in advanced dementia: a narrative review. Clinical Therapeutics, 36(11), 1512–1517. https://doi.org/10.1016/j.clinthera.2014.10.006