The Burden of Next-of-Kin Carers of Dementia Sufferers in the Home Environment
Abstract
1. Introduction
2. Materials and Methods
2.1. Study Design
2.2. Sample
2.3. Data Collection
2.4. Ethical Approval
2.5. Data Analysis
3. Results
3.1. Profile of Next-of-Kin Carers
3.2. Selected Factors Related to the Burden Dimensions of Next-of-Kin Carers Caring for Dementia Sufferers
4. Discussion
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
- The European Pillar of Social Rights in 20 Principles. 2017. Available online: https://ec.europa.eu/commission/priorities/deeper-and-fairer-economic-and-monetary-union/european-pillar-social-rights/european-pillar-social-rights-20-principles_en (accessed on 24 September 2022).
- Brimblecombe, N.; Fernandez, J.-L.; Knapp, M.; Rehill, A.; Wittenberg, R. Review of the international evidence on support for unpaid carers. J. Long-Term Care 2018, 25–40. [Google Scholar] [CrossRef]
- Broese van Groenou, M.I.; Boer, D.A. Providing informal care in a changing society. Eur. J. Ageing 2016, 13, 271–279. [Google Scholar] [CrossRef] [PubMed]
- Lindeza, P.; Rodrigues, M.; Costa, J.; Guerreio, M.; Rosa, M.M. Impact of dementia on informal care: A systematic review of family carers’ perceptions. BMJ Support. Palliat. Care 2020, 1–2. [Google Scholar] [CrossRef] [PubMed]
- Madruga, M.; Gozalo, M.; Prieto, J.; Adsuar, J.C.; Gusi, N. Psychological symptomatology in informal carers of persons with dementia: Influences on health-related quality of life. Int. J. Environ. Res. Public Health 2020, 17, 1078. [Google Scholar] [CrossRef] [PubMed]
- Malhotra, C.; Hazirah, M.; Tan, L.L.; Malhotra, R.; Yap, P.; Balasundaram, B.; Tong, K.-M.; Pollak, K.I. Family caregiver perspectives on the suffering of persons with severe dementia: A qualitative study. J. Pain Symptom Manag. 2021, 62, 20–27.e2. [Google Scholar] [CrossRef]
- Li, J.; Song, Y. Formal and informal care. In Encyclopedia of Gerontology and Population Aging; Gu, D., Dupre, M., Eds.; Springer: Cham, Switzerland, 2019. [Google Scholar] [CrossRef]
- Plöthner, M.; Schmidt, K.; de Jong, L.; Zeidler, J.; Damm, K. Needs and preferences of informal carers regarding outpatient care for the elderly: A systematic literature review. BMC Geriatr. 2019, 19, 82. [Google Scholar] [CrossRef]
- Sutcliffe, C.; Giebel, C.; Bleijlevens, M.; Lethin, C.; Stolt, M.; Saks, K.; Soto, M.E.; Meyer, G.; Zabalegui, A.; Chester, H.; et al. Caring for a Person with Dementia on the Margins of Long-Term Care: A Perspective on Burden From 8 European Countries. J. Am. Med. Dir. Assoc. 2017, 18, 967–973. [Google Scholar] [CrossRef]
- Bremer, P.; Challis, D.; Hallberg, I.R.; Leino-Kilpi, H.; Saks, K.; Vellas, B.; Zwakhalen, S.M.G.; Sauerland, D. Informal and formal care: Substitutes or complements in care for people with dementia? Empirical evidence for 8 European countries. Health Policy 2017, 121, 613–622. [Google Scholar] [CrossRef]
- Alzheimer’s Disease International; Karolinska Institutet. The Global Voice on Dementia. Global Estimates of Informal Care. 2018. Available online: https://www.alzint.org/u/global-estimates-of-informal-care.pdf (accessed on 24 September 2022).
- Allen, A.; Buckley, M.M.; Cryan, J.F.; Ní Chorcoráin, A.; Dinan, T.G.; Kearney, P.M.; O’Caoimh, R.; Calnan, M.; Clarke, G.; William Molloy, D. Informal caregiving for dementia patients: The contribution of patient characteristics and behaviours to caregiver burden. Age Ageing 2020, 49, 52–56. [Google Scholar] [CrossRef]
- Nordtug, B.; Malmedal, W.K.; Alnes, R.E.; Blindheim, K.; Steinsheim, G.; Moe, A. Informal carers and persons with dementia’s everyday life coping. Health Psychol. Open 2021, 8, 20551029211000954. [Google Scholar] [CrossRef]
- Alzheimer Europe. Dementia in Europe Yearbook 2019, Estimating the Prevalence of Dementia in Europe. 2019. Available online: https://www.alzheimer-europe.org/sites/default/files/alzheimer_europe_dementia_in_europe_yearbook_2019.pdf (accessed on 30 May 2022).
- Fertalova, T.; Ondriova, T. Nursing interventions in the context of formal and informal care for patients with dementia. J. Socioter. 2019, 5, 21–26. [Google Scholar]
- Kotradyová, K. Determinants characterizing the life of a caregiver treating an individual with Alzheimer’s disease. Kontakt 2018, 20, 72–80. [Google Scholar] [CrossRef]
- Ondriova, I.; Fertalova, T. Risk of Burden on a Carer of a Patient with Alzheimer’s Type Dementia in the Family. Clin. Soc. Work Health Interv. 2020, 11, 45–50. [Google Scholar] [CrossRef]
- Majernikova, L.; Hudakova, A.; Obrocnikova, A. The Issue of Burnout for Lay Carers of Patients with Dementia in East Slovakia; CER Comparative European Research 2021; Science Publishing: London, UK, 2020; pp. 112–114. ISBN 978-1-9993071-7-2. [Google Scholar]
- Slamkova, A.; Polednikova, L.; Pavelova, L. Caregiver burden in home care in the Czech Republic and Slovakia. Zdr. Listy 2020, 8, 63–68, ISSN 2644-4909. Available online: https://zl.tnuni.sk/fileadmin/Archiv/2020/2020-8.c.3/ZL_2020_8_3_09_Slamkova.pdf (accessed on 18 August 2022).
- Poliakova, N.; Kralova, E.; Kohutova, J. Informal Long-Term Care for the Elderly with Dementia in Slovakia. Univ. Rev. 2020, 14, 13–19. Available online: https://ur.tnuni.sk/fileadmin/dokumenty/2020-no3/UR_V14_ISS-3_13to19_Poliakova.pdf (accessed on 21 August 2022).
- Greene, J.G.; Smith, R.; Gardiner, M.; Timbury, G.C. Measuring behavioural disturbance of elderly demented patients in the community and its effects on relatives: A factor analytic study. Age Ageing 1982, 11, 121–126. [Google Scholar] [CrossRef]
- Lesher, S.K. The Presence, Nature, and Impact of Caregiver Stress and Self-Care in Informal Carers for Veterans with Alzheimer’s or Other Dementia. Ph.D. Thesis, The University of Oklahoma, Norman, OK, USA, 2015. Available online: https://hdl.handle.net/11244/15229 (accessed on 21 September 2022).
- Thommessen, B.; Aarsland, D.; Braekhus, A.; Oksengaard, A.R.; Engedal, K.; Laake, K. The psychosocial burden on spouses of the elderly with stroke, dementia, and Parkinson’s disease. Int. J. Geriatr. Psychiatry 2002, 17, 78–84. [Google Scholar] [CrossRef]
- Ulstein, I.; Bruun Wyller, T.; Engedal, K. The relative stress scale is a useful instrument to identify various aspects of career burden in dementia. Int. J. Geriatr. Psychiatry 2007b, 22, 61–67. [Google Scholar] [CrossRef]
- Van Durme, T.; Macq, J.; Jeanmart, C.; Gobert, M. Tools for measuring the impact of informal caregiving of the elderly: A literature review. Int. J. Nurs. Stud. 2012, 49, 490–504. [Google Scholar] [CrossRef]
- Greene, J.G. Relatives’ Stress Scale (RSS). Ageing and Health. Intern-nr. 00007. 1982. Available online: https://www.aldringoghelse.no/ah-archive/documents/Belastningsskala_P%C3%A5r%C3%B8rende-skjema_09.2019_WEB.pdf (accessed on 18 September 2022).
- Terum, T.M.; Testad, I.; Rongve, A.; Aarsland, D.; Svendsboe, E.; Andersen, J.R. The association between specific neuropsychiatric disturbances in people with Alzheimer’s disease and dementia with Lewy bodies and carer distress. Int. J. Geriatr. Psychiatry 2019, 34, 1421–1428. [Google Scholar] [CrossRef]
- Taranrød, L.B.; Eriksen, S.; Pedersen, I.; Kirkevold, Ø. Characteristics, Burden of Care and Quality of Life of Next of Kin of People with Dementia Attending Farm-Based Day Care in Norway: A Descriptive Cross-Sectional Study. J. Multidiscip. Healthc. 2020, 13, 1363–1373. [Google Scholar] [CrossRef] [PubMed]
- Parmar, J.; Sacrey, L.A.R. Screening for Stress and Burden in Carers of Seniors. Covenant Health. Network of Excellence in Seniors’ Health and Wellness. 2017. Available online: https://seniorsnetworkcovenant.ca/wp-content/uploads/Screening-for-Stress-and-Burden-in-Carers-of-Seniors-Oct-2018.pdf (accessed on 7 October 2022).
- Ulstein, I.; Wyller, T.B.; Engedal, K. High score on the relative stress scale, a marker of possible psychiatric disorder in family carers of patients with dementia. Int. J. Geriatr. Psychiatry 2007a, 22, 195–202. [Google Scholar] [CrossRef] [PubMed]
- Tokovska, M. Support groups for relatives of Alzheimer’s patients. Via Pract. 2016, 13, 160–162. Available online: http://hdl.handle.net/11250/2502841 (accessed on 20 May 2022).
- Sanprakhon, P.; Chaimongkol, N.; Hengudomsub, P. Relationships between caregiving stress and sleep quality among family carers of older adults with dementia in Thailand. Belitung Nurs. J. 2022, 8, 229–234. [Google Scholar] [CrossRef]
- Helvik, A.S. Coping and Health Promotion in Persons with Dementia. In Health Promotion in Health Care—Vital Theories and Research; Haugan, G., Eriksson, M., Eds.; Springer: Cham, Switzerland, 2021. [Google Scholar] [CrossRef]
- Fung, W.Y.; Chien, W.T. The effectiveness of a mutual support group for family carers of a relative with dementia. Arch. Psychiatr. Nurs. 2002, 16, 134–144. [Google Scholar] [CrossRef] [PubMed]
- World Health Organization. Ethical principles for the guidance of physicians in medical research: The Declaration of Helsinki. Bull. World Health Organ. 2001, 79, 373–374. [Google Scholar]
- Hendriks, A. Council of Europe Convention for the Protection of Human Rights and Dignity of the Human Being with Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine; Council of Europe: Strasbourg, France, 1997; Available online: https://www.coe.int/en/web/bioethics/oviedo-convention (accessed on 20 April 2022).
- Bruvik, F.K.; Ulstein, I.D.; Ranhoff, A.H.; Engedal, K. The effect of coping on the burden in family carers of persons with dementia. Aging Ment. Health 2013, 17, 973–978. [Google Scholar] [CrossRef]
- Luppa, M.; Riedel-Heller, S.G. Carers’ distress. Int. Psychogeriatr. 2021, 33, 311–313. [Google Scholar] [CrossRef]
- Liu, J. Spouse and Adult-Child Dementia Carers in Chinese American Families: Who Are More Stressed Out? J. Am. Med. Dir. Assoc. 2021, 22, 1512–1517. [Google Scholar] [CrossRef]
- Schlomann, A.; Schacke, C.; Leipold, B.; Zank, S. Berlin Inventory of Caregiver Stress—Dementia (BICS-D). Gerontologist 2021, 61, e173–e184. [Google Scholar] [CrossRef]
- Brodaty, H.; Donkin, M. Family carers of people with dementia. Dialogues Clin. Neurosci. 2022, 11, 217–228. [Google Scholar] [CrossRef]
- Brini, S.; Hodkinson, A.; Davies, A.; Hirani, S.; Gathercole, R.; Howard, R.; Newman, S.P. In-home dementia caregiving is associated with greater psychological burden and poorer mental health than out-of-home caregiving: A cross-sectional study. Aging Ment. Health 2022, 26, 709–715. [Google Scholar] [CrossRef]
- Peavy, G.; Mayo, A.M.; Avalos, C.; Rodriguez, A.; Shifflett, B.; Edland, S.D. Perceived Stress in Older Dementia Carers: Mediation by Loneliness and Depression. Am. J. Alzheimer’s Dis. Other Dement. 2020, 37, 15333175211064756. [Google Scholar] [CrossRef]
- Yang, X.Y.; Morton, P.; Yang, F.; Fang, B. The Moderation Role of Neuroticism for Anxiety among Burdened Dementia Carers: A Study on Care Giver-Recipient Dyads. J. Gerontol. Soc. Work 2022, 65, 692–710. [Google Scholar] [CrossRef]
- Wang, J.; Xiao, L.D.; He, G.-P.; De Bellis, A. Family caregiver challenges in dementia care in a country with undeveloped dementia services. J. Adv. Nurs. 2014, 70, 1369–1380. [Google Scholar] [CrossRef]
- World Health Organization. Word Failing to Address Dementia Challenge. 2021. Available online: https://www.who.int/news/item/02-09-2021-world-failing-to-address-dementia-challenge (accessed on 14 March 2022).
- Alzheimer Europe. National Dementia Strategies. 2022, Available 06.10.2022. Available online: https://www.alzheimer-europe.org/policy/national-dementia-strategies (accessed on 23 March 2022).
- Ciccarelli, N.; Van Soest, A. Informal Caregiving, Employment Status and Work Hours of the 50+ Population in Europe. Economist 2018, 166, 363–396. [Google Scholar] [CrossRef]
- Heymann, J.; Raub, A.; Waisath, W.; Earle, A.; Stek, P.; Sprague, A. Paid Leave to Meet the Health Needs of Aging Family Members in 193 Countries. J. Aging Soc. Policy 2022, 1–24. [Google Scholar] [CrossRef]
- World Health Organisation. Global Action Plan on the Public Health Response to Dementia 2017–2025; World Health Organisation: Geneva, Switzerland, 2017; Available online: https://www.who.int/publications/i/item/global-action-plan-on-the-public-health-response-to-dementia-2017---2025 (accessed on 20 March 2022).
- Riedel, M.; Kraus, M.; Mayer, S. Organisation and Supply of Long-term Care Services for the Elderly: A Bird’s-eye View of Old and New EU Member States. Soc. Policy Adm. 2016, 50, 824–845. [Google Scholar] [CrossRef]
- Hanssen, I.; Tran, P.T.M. The influence of individualistic and collectivistic morality on dementia care choices. Nurs. Ethics 2019, 26, 2047–2057. [Google Scholar] [CrossRef]
- Gorostiaga, A.; Etxeberria, I.; Salaberria, K.; Kortabitarte, I. Primary and Secondary Carers of People with Dementia (PwD): Differential Patterns and Implications for Psychological Support. Healthcare 2022, 10, 1102. [Google Scholar] [CrossRef]
- Baum, F.; MacDougall, C.; Smith, D. Participatory action research. J. Epidemiol. Commun. 2006, 60, 854–857. [Google Scholar] [CrossRef] [PubMed]
Variable | ||
---|---|---|
Gender of next-of-kin carers | Woman | 83.80% |
Men | 16.20% | |
Age of dementia sufferers | Mean (SD), range | 78.88 (7.70) 52 to 97 |
Age of next-of-kin carers | Mean (SD), range | 74.65 (6.80) 43 to 88 |
Relationship | Children | 29.90% |
Partners | 15.10% | |
Grandchildren | 23.40% | |
Family in law | 23.30% | |
Other | 8.30% |
Gender of Next-of-Kin Carers | Age of Dementia Sufferers | Age of Next-of-Kin Carers | Relationship | ||
---|---|---|---|---|---|
Emotional Distress | M | p | p | p | p |
1. Do you ever feel you can no longer cope with the situation? | 3.79 | 0.003 | <0.001 | 0.040 | |
2. Do you ever feel you need a break? | 3.88 | <0.001 | 0.030 | ||
3. Do you ever get depressed by the situation? | 3.96 | 0.008 | 0.002 | ||
4. Has your own health suffered at all? | 3.60 | ||||
5. Do you worry about potential accidents happening to…? | 4.17 | 0.002 | |||
6. Do you ever feel that there will be no end to the problem? | 3.46 | 0.003 |
Gender of Next-of-Kin Carers | Age of Dementia Sufferers | Age of Next-of-Kin Carers | Relationship | ||
---|---|---|---|---|---|
Social Distress | M | p | p | p | p |
7. Do you find it difficult to get away on holiday? | 4.13 | <0.001 | |||
8. How much has your social life been affected? | 4.15 | ||||
9. How much has the domestic routine been upset? | 4.19 | 0.013 | 0.002 | ||
10. Is your sleep interrupted by …? | 3.72 | <0.001 | |||
11. Has your standard of living been reduced? | 3.77 | ||||
13. Are you at all prevented from having visitors? | 3.57 |
Gender of Next-of-Kin Carers | Age of Dementia Sufferers | Age of Next-of-Kin Carers | Relationship | ||
---|---|---|---|---|---|
Life Upset | M | p | p | p | p |
12. Do you ever feel embarrassed by…? | 3.59 | <0.001 | 0.003 | ||
14. Do you ever get cross or angry with…? | 3.22 | 0.002 | |||
15. Do you ever feel frustrated at times with…? | 3.37 | 0.007 | <0.001 |
Publisher’s Note: MDPI stays neutral with regard to jurisdictional claims in published maps and institutional affiliations. |
© 2022 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
Share and Cite
Tokovska, M.; Šolcová, J. The Burden of Next-of-Kin Carers of Dementia Sufferers in the Home Environment. Healthcare 2022, 10, 2441. https://doi.org/10.3390/healthcare10122441
Tokovska M, Šolcová J. The Burden of Next-of-Kin Carers of Dementia Sufferers in the Home Environment. Healthcare. 2022; 10(12):2441. https://doi.org/10.3390/healthcare10122441
Chicago/Turabian StyleTokovska, Miroslava, and Jana Šolcová. 2022. "The Burden of Next-of-Kin Carers of Dementia Sufferers in the Home Environment" Healthcare 10, no. 12: 2441. https://doi.org/10.3390/healthcare10122441
APA StyleTokovska, M., & Šolcová, J. (2022). The Burden of Next-of-Kin Carers of Dementia Sufferers in the Home Environment. Healthcare, 10(12), 2441. https://doi.org/10.3390/healthcare10122441