Effects of palliative care interventions for people with dementia on caregiver health and possibilities of implementing these services
systematic review
DOI:
https://doi.org/10.15448/1980-6108.2024.1.45652Keywords:
caregivers, clinical trial, dementia, palliative careAbstract
Aims: to investigate if interventions related to palliative care have positive effects on the health of caregivers of people with dementia. Methods: this is a systematic review on palliative care for people with dementia and outcomes related to family and caregiving issues. Our research process identified 649 articles, with 8 included in this review. Results: the studies had an average duration of 4 months for intervention completion and varied in terms of location and approach, with an educational approach predominating. Positive effects on the health of family caregivers, especially in managing anxiety and depression, were observed with palliative care interventions. Conclusions: only four studies were randomized, highlighting the need for more research to establish a comparative basis for intervention effects.
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Akbari M, Kirkwood TB, Bohr VA. Mitochondria in the signaling pathways that control longevity and health span. Ageing Res Rev. 2019;(54):100940. https://doi.org/10.1016/j.arr.2019.1009400 DOI: https://doi.org/10.1016/j.arr.2019.100940
Mattos WC, Derech AR. Cuidados paliativos providos por médicos de família e comunidade na atenção primária à saúde brasileira. Rev Bra Med Fam Comunidade. 2020;15(42):2094. https://doi.org/10.5712/rbmfc15(42)2094 DOI: https://doi.org/10.5712/rbmfc15(42)2094
Chien SY, Zaslavsky O, Berridge C. Technology usability for people living with dementia: concept analysis. JMIR Aging. 2024;7:e51987. https://doi.org/10.2196/51987 DOI: https://doi.org/10.2196/51987
Pike KE, Cavuoto MG, Li L, Wright BJ, Kinsella GJ. Subjective cognitive decline: level of risk for future dementia and mild cognitive impairment, a meta-analysis of longitudinal studies. Neuropsychol Rev. 2022;32:703-35. https://doi.org/10.1007/s11065-021-09522-3 DOI: https://doi.org/10.1007/s11065-021-09522-3
Yates J, Stanyon M, Samra R, Clare L. Challenges in disclosing and receiving a diagnosis of dementia: a systematic review of practice from the perspectives of people with dementia, carers, and healthcare professionals. International Psychogeriatrics. 2021;33(11):1161-92. https://doi.org/10.1017/S1041610221000119 DOI: https://doi.org/10.1017/S1041610221000119
Malhi R, McElveen J, O´Donnell L. Palliative care of the patient with dementia. Dela J Public Health. 2021;7(4):92-8. https://doi.org/10.32481%2Fdjph.2021.09.012 DOI: https://doi.org/10.32481/djph.2021.09.012
Lundin E, Godskesen TE. End-of-life care for people with advanced dementia and pain: a qualitative study in Swedish nursing homes. BMC Nursing. 2021;20(48). https://doi.org/10.1186/s12912-021-00566-7. DOI: https://doi.org/10.1186/s12912-021-00566-7
Soares NV, Corrêa BR, Fontana RT, Brum ZP, Guimarães CA, Silva AF, et al. Sentimentos, expectativas e adaptação de idosos internados em instituição de longa permanência. REME rev min enferm. 2018;22:e1124.
Senderovich H, Retnasothie S. A systematic review of the integration of palliative care in dementia management. Palliat Support Care. 2019;18(4):495-506. https://doi.org/10.1017/s1478951519000968 DOI: https://doi.org/10.1017/S1478951519000968
Academia Nacional de Cuidados Paliativos. O que são cuidados paliativos [Internet]. Academia Nacional de Cuidados Paliativos; 2022 [citado em 3 jul. 2024]. Disponível em: https://paliativo.org.br/o-que-sao-cuidados-paliativos
Okon TR, Christensen A. Overview of comprehensive patient assessment in palliative care [Internet]. UpToDate, 2024 [citado em 3 jul. 2024]. Disponível em: https://www.uptodate.com/contents/overview-of-comprehensive-patient-assessment-in-palliative-care?search=overview-of-%20-patient-assessment-inpalliative-care&source=search_result&selectedTitle=1~150&usage_type=default&display_rank=1.
Portugal, Ministério da Saúde, Comissão Nacional de Cuidados Paliativos. Plano estratégico para o desenvolvimento dos cuidados paliativos. Biênio 2017 – 2018 [Internet]. 2016 [citado em 3 jul. 2024]. Disponível em: https://smartcms.boldapps.pt/publicfiles/Uploads/Files/91/SubContent/eaf0d7f9-f9bd-40ab-8d7d-19ba4d67c162.pdf
Physiotherapy Evidence Database (PEDro). Escala de PEDro [Internet]. 2018 [citado em 2 jun. 2023]. Disponível em: https://www.pedro.org.au/portuguese/downloads/pedro-scale
Bonner GJ, Freels S, Ferrans C, Steffen A, Suarez ML, Dancy BL, et al. Advance care planning for african american caregivers of relatives with dementias: cluster randomized controlled trial. Am J Hosp Palliat Care. 2021;38(6):547-56. https://doi.org/10.1177/1049909120916127 DOI: https://doi.org/10.1177/1049909120916127
Hanson LC, Kistler CE, Lavin K, Gabriel SL, Ernecoff NC, Lin FC, et al. Triggered palliative care for late-stage dementia: a pilot randomized trial. J Pain Symptom Manage. 2019;57(1):10-19. https://doi.org/10.1016/j.jpainsymman.2018.10.494 DOI: https://doi.org/10.1016/j.jpainsymman.2018.10.494
Sampson EL, Jones L, Thuné-Boyle IC, Kukkastenvehmas R, King M, Leurent B, et al. Palliative assessment and advance care planning in severe dementia: an exploratory randomized controlled trial of a complex intervention. Palliat Med. 2011;25(3):197-209. https://doi.org/10.1177/0269216310391691 DOI: https://doi.org/10.1177/0269216310391691
Yeung CC, Ho KH, Chan HY. A dyadic advance care planning intervention for people with early-stage dementia and their family caregivers in a community care setting: a feasibility trial. BMC Geriatrics. 2023;23:115. https://doi.org/10.1186/s12877-023-03815-3 DOI: https://doi.org/10.1186/s12877-023-03815-3
Reinhardt JP, Chichin E, Posner L, Kassabian S. Vital conversations with family in the nursing home: preparation for end-stage dementia care. J Soc Work End Life Palliat Care. 2014;10(2):112-26. https://doi.org/10.1080/15524256.2014.906371 DOI: https://doi.org/10.1080/15524256.2014.906371
Davies N, Aker N, Vickerstaff V, Sampson EL, Rait G. A feasibility study of a decision aid to support family carers of people with severe dementia or those towards the end-of-life. Palliat Med. 2022;36(9):1432-39. https://doi.org/10.1177/02692163221122379 DOI: https://doi.org/10.1177/02692163221122379
Duggleby W, Ruiz KJ, Ploeg J, McAiney C, Peacock S, Nekolaichuk C, et al. Mixed-methods single-arm repeated measures study evaluating the feasibility of a web-based intervention to support family carers of persons with dementia in long-term care facilities. Pilot Feasibility Stud. 2018;4:165. https://doi.org/10.1186/s40814-018-0356-7 DOI: https://doi.org/10.1186/s40814-018-0356-7
Moore KJ, Candy B, Davis S, Gola A, Harrington J, Kupeli N et al. Implementing the compassion intervention, a model for integrated care for people with advanced dementia towards the end of life in nursing homes: a naturalistic feasibility study. BMJ Open. 2017;7:e015515. https://doi.org/ 10.1136/bmjopen-2016-015515 DOI: https://doi.org/10.1136/bmjopen-2016-015515
O’Connor AM. Validation of a decisional conflict scale. Med Decis Making. 1995;15(1):25-30. https://doi.org/10.1177/0272989X9501500105 DOI: https://doi.org/10.1177/0272989X9501500105
Rabin R, de Charro F. EQ-5D: a measure of health status from the EuroQol Group. Ann Med. 2001;33(5):337-43. https://doi.org/10.3109/07853890109002087 DOI: https://doi.org/10.3109/07853890109002087
Kessler RC, Andrews G, Colpe LJ, Hiripi E, Mroczek DK, Normand SL et al. Short screening scales to monitor population prevalences and trends in non-specific psychological distress. Psychol Med. 2002;32(6):959-76. https://doi.org/10.1017/s0033291702006074 DOI: https://doi.org/10.1017/S0033291702006074
Kiely DK, Volicer L, Teno J, Jones RN, Prigerson HG, Mitchell SL. The validity and reliability of scales for the evaluation of end-of-life care in advanced dementia. Alzheimer Dis Assoc Disord. 2006;20(3):176-81. https://doi.org/10.1097/00002093-200607000-00009 DOI: https://doi.org/10.1097/00002093-200607000-00009
Hébert R, Bravo G, Préville M. Reliability, validity and reference values of the zarit burden interview for assessing informal caregivers of community-dwelling older persons with dementia. Canadian Journal on Aging / La Revue canadienne du vieillissement. 2000;19(4):494-507. https://doi.org/10.1017/S0714980800012484 DOI: https://doi.org/10.1017/S0714980800012484
World Hospice Palliative Care Alliance (WHPCA). Global atlas of palliative care. 2nd edition [Internet]. WHO: London, UK; 2020 [citado em 2 jun 2022]. Disponível em: http://www.thewhpca.org/resources/global-atlas-on-end-of-life-care.
Li WW, Chhabra J, Singh S. Palliative care education and its effectiveness: a systematic review. Public Health. 2021;194:96-108. https://doi.org/10.1016/j.puhe.2021.02.033 DOI: https://doi.org/10.1016/j.puhe.2021.02.033
Dias LM, Bezerra MR, Barra WF, Nunes R, Rego F. Planejamento antecipado de cuidados: guia prático. Rev. Bioét. 2022;30(3):525-33. https//:doi.org/10.1590/1983-80422022303546PT DOI: https://doi.org/10.1590/1983-80422022303546en
Castro MC, Fuly PS, Santos ML, Chagas MC. Dor total e teoria do conforto: implicações no cuidado ao paciente em cuidados paliativos oncológicos. Rev Gaúcha Enferm. 2021;42:e20200311. https://doi.org/10.1590/1983-1447.2021.20200311 DOI: https://doi.org/10.1590/1983-1447.2021.20200311
Pereira RA, Silva RM, Pereira ER, Siqueira AS, Frederico CG, Carneiro EC. The phenomenological perception of nursing residents about total pain in patients in palliative oncological care: an integrative review. RSD [Internet]. 2022 [citado em 3 jul. 2024];11(12):e151111234263. Disponível em: https://rsdjournal.org/index.php/rsd/article/view/34263
Paiva CF, Santos TCF, Costa LMC, Almeida-Filho AJ. Trajetória dos cuidados paliativos no mundo e no Brasil. In: Peres MAA, Padilha MI, Santos TCF, Almeida Filho AJ, organizadores. Potencial interdisciplinar da enfermagem: histórias para refletir sobre o tempo presente. Brasília, DF: Editora ABen; 2022. p. 41-49. https://doi.org/10.51234/aben.22.e09.c04 DOI: https://doi.org/10.51234/aben.22.e09.c04
Silva, RR, Massi, GA. Palliative care services path in Brazil: historical and current aspects. RSD [Internet]. 2022 [citado em 3 jul. 2024];11(11):e222111133545. Disponível em: https://rsdjournal.org/index.php/rsd/article/view/33545 DOI: https://doi.org/10.33448/rsd-v11i11.33545
Socci M, Principi A, Di Rosa M, Carney P, Chiatti C, Lattanzio F. Impact of working situation on mental and physical health for informal caregivers of older people with alzheimer’s disease in Italy. Results from the UP-TECH longitudinal study. Aging Ment Health. 2021;25(1):25-31. https://doi.org/10.1080/13607863.2019.1667295 DOI: https://doi.org/10.1080/13607863.2019.1667295
Uneno Y, Kotera Y, Fujisawa D, Kataoka Y, Kosugi K, Murata N, et al. Development of a novel COMPAssion focused online psyChoTherapy for bereaved informal caregivers: the COMPACT feasibility trial protocol. BMJ Open. 2022;12(12):e067187. https://doi.org/10.1136/bmjopen-2022-067187 DOI: https://doi.org/10.1136/bmjopen-2022-067187
Oechsle K, Ullrich A, Marx G, Benze G, Heine J, Dickel LM, et al. Psychological burden in family caregivers of patients with advanced cancer at initiation of specialist inpatient palliative care. BMC Palliat Care. 2019;18(1):102. https://doi.org/10.1186/s12904-019-0469-7 DOI: https://doi.org/10.1186/s12904-019-0469-7
Donnelly S, Prizeman G, Coimín DÓ, Korn B, Hynes G. Voices that matter: end-of-life care in two acute hospitals from the perspective of bereaved relatives. BMC Palliat Care. 2018.17:117. https://doi.org/10.1186/s12904-018-0365-6 DOI: https://doi.org/10.1186/s12904-018-0365-6
Kustanti CY, Fang HF, Linda Kang X, Chiou JF, Wu SC, Yunitri N, et al. The effectiveness of bereavement support for adult family caregivers in palliative care: a meta‐analysis of randomized controlled trials. J Nurs Scholarsh. 2021;53(2):208-17. https://doi.org/10.1111/jnu.12630 DOI: https://doi.org/10.1111/jnu.12630
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