Effects of Early- and Late-Onset Alzheimer's Disease on Caregiver Burden

Merve Aliye Akyol; Burcu Akpınar Söylemez; Özlem Küçükgüçlü

doi:10.21763/tjfmpc.1132131

Research Article

Effects of Early- and Late-Onset Alzheimer's Disease on Caregiver Burden

Year 2023, Volume: 17 Issue: 1, 79 - 86, 31.03.2023

Merve Aliye Akyol Burcu Akpınar Söylemez Özlem Küçükgüçlü

https://doi.org/10.21763/tjfmpc.1132131

Abstract

Introduction: Alzheimer’s disease (AD) is the most common cause of dementia. Early-onset AD (EOAD) occurs when it affects someone under the age of 65, and many people diagnosed are in their 40s and 50s. Many studies in the literature examine the caregiver burden of people with late-onset AH (LOAD), and it is unclear whether the experience of caregiving differs according to the age of onset of AH. Aim: This study aimed to determine whether there is a difference in the caregiver burden of primary informal caregivers of community-dwelling patients with AD according to the age of onset of the disease. Methods: A comparative descriptive study design was used in this study. The sample comprised 109 people with AD (34 EOAD and 75 LOAD) and their caregivers. Sociodemographic characteristic questionnaires, the Caregiver Burden Inventory, the Mini-Mental State Examination, the Neuropsychiatric Inventory, Barthel’s Activities of Daily Living, and the Clinical Dementia Rating Scale were used. Descriptive statistics, t-tests, and chi-square were used to describe and analyze the data. Results: Caregivers of patients with EOAD had significantly higher scores for social burden than caregivers of patients with LOAD (t=3.156, p=0.002). Furthermore, caregivers of patients with EOAD experienced more developmental, physical, and total burden than caregivers of patients with LOAD. However, these differences were not statistically significant (p>0.05). Conclusion: Considering that there will be differences in the caregiver burden of AH according to the age of onset, it is necessary to offer services tailored to the needs of AD caregivers.

Keywords

Alzheimer’s Disease, dementia, caregiver burden

Supporting Institution

Yoktur.

Project Number

yoktur

Thanks

We would like to acknowledge Professor Doctor Görsev YENER for support during data collection. Again we would like to thank study participants.

References

1. Alzheimer’s Association 2020. Access link: https://www.alz.org/alzheimers-dementia/what-is-alzheimers/younger-early-onset Access date:16.06.2022.
2. Johannessen A, Möller, A. Experiences of persons with early-onset dementia in everyday life: A qualitative study. Dementia 2013;12(4):410-424. doi:10.1177/1471301211430647.
3. Rossor MN, Fox NC, Mummery CJ, et al. The diagnosis of young-onset dementia. The Lancet Neurology 2010;9(8):793-806. doi:10.1016/S1474-4422(10)70159-9.
4. van Vliet D, de Vugt ME, Bakker C, et al. Impact of early onset dementia on caregivers: A review. International Journal of Geriatric Psychiatry 2010;25(11):1091-1100. doi:10.1002/gps. 2439.
5. Shrestha R, Wuerz T, Appleby BS. Rapidly progressive young-onset dementias. Psychiatric Clinics 2015,38(2):221-232. doi:10.1016/j.psc.2015.01.001.
6. Jefferies K, Agrawal N. Early-onset dementia. Advances in Psychiatric Treatment 2009;15(5):380-388. doi:10.1192/apt.bp.107.004572.
7. Stanley K, Walker Z. Do patients with young onset Alzheimer's disease deteriorate faster than those with late onset Alzheimer's disease? A review of the literature. International Psychogeriatrics 2014;26(12):1945-1953. doi: 10.1017/S1041610214001173.
8. Van Vliet D, De Vugt ME, Bakker C, et al. Time to diagnosis in young-onset dementia as compared with late-onset dementia. Psychological Medicine 2013;43(2):423-432. doi: 10.1017/S0033291712001122.
9. Ducharme F, Kergoat MJ, Antoine P, et al. The unique experience of spouses in early-onset dementia. American Journal of Alzheimer's Disease & Other Dementias® 2013;28:634-641. doi:10.1177/1533317513494443.
10. Dourado MCN, Laks J, Kimura NR, et al. Young‐onset Alzheimer dementia: a comparison of Brazilian and Norwegian carers' experiences and needs for assistance. International Journal of Geriatric Psychiatry 2018;33(6):824-831. doi: 10.1002/gps.4717.
11. Kaiser S, Panegyres PK. The psychosocial impact of young onset dementia on spouses. American Journal of Alzheimer's Disease & Other Dementias® 2007;21(6):398-402. doi:10.1177/1533317506293259.
12. Millenaar JK, Bakker C, van Vliet D, et al. Exploring perspectives of young onset dementia caregivers with high versus low unmet needs. International Journal of Geriatric Psychiatry 2018;33(2):340-347. doi:10.1002/gps.4749.
13. Bakker C, de Vugt ME, van Vliet D, et al. Unmet needs and health-related quality of life in young-onset dementia. The American Journal of Geriatric Psychiatry 2014;22(11):1121-1130. doi:10.1016/j.jagp. 2013.02.006.
14. Miranda-Castillo C, Woods B, Galboda K, et al. Unmet needs, quality of life and support networks of people with dementia living at home. Health and Quality of Life Outcomes 2010;8,132. doi:10.1186/1477-7525-8-132.
15. Gaugler JE, Kane RL, Kane RA, et al. The effects of duration of caregiving on institutionalization. The Gerontologist 2005;45(1):78-89. doi:10.1093/geront/45.1.78.
16. Conde-Sala JL, Reñé-Ramírez R, Turró-Garriga O, et al. Factors associated with the variability in caregiver assessments of the capacities of patients with Alzheimer disease. Journal of Geriatric Psychiatry and Neurology 2013;26(2):86-94. doi:10.1177/0891988713481266.
17. Gronning H, Kristiansen S, Dyre D, et al. Caregiver burden and psychosocial services in patients with early and late onset Alzheimer’s disease. Danish Medical Journal 2013;60(7):A4649.
18. Millenaar JK, de Vugt ME, Bakker C, et al. The impact of young onset dementia on informal caregivers compared to late onset dementia: results from the NeedYD study. The American Journal of Geriatric Psychiatry 2016;24:467–474. doi:10.1016/j.jagp.2015.07.005. doi: 10.1111/psyg.12556.
19. Wang VW, Kandiah N, Lin X, Wee HL. Does health-related quality of life in Asian informal caregivers differ between early-onset dementia and late-onset dementia? Psychogeriatrics. 2020 Sep;20(5):608-619. doi: 10.1111/psyg.12556.
20. Lim L, Zhang A, Lim L, et al. High caregiver burden in young onset dementia:What factors need attention? Journal of Alzheimer's Disease 2018;61(2):537-543. doi:10.3233/JAD-170409.
21. McKhann GM, Knopman DS, Chertkow H, et al. The diagnosis of dementia due to Alzheimer’s disease: Recommendations from the National Institute on Aging-Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer's disease. Alzheimer's & Dementia 2011;7(3):263-269. doi: 10.1016/j.jalz.2011.03.005.
22. Novak M, Guest C. (1989). Application of a multidimensional caregiver burden inventory. The gerontologist 1989;29(6):798-803. doi:10.1093/geront/29.6.798.
23. Küçükgüçlü Ö, Esen A, Yener G. The reliability and validity of the caregiver burden inventory in Turkey. Journal of Neurological Sciences (Turkish) 2009;26(1):60-73.
24. Folstein MF, Robins LN, Helzer JE. The mini-mental state examination. Archives of General Psychiatry 1983;140(7),:812. doi: 10.1001/archpsyc.1983.01790060110016.
25. Güngen C, Ertan T, Eker E, et al. Reliability and validity of the standardized Mini Mental State Examination in the diagnosis of mild dementia in Turkish population. Turkish Journal of Psychiatry 2002;13(4):273-281.
26. Cummings JL, Mega M, Gray K, et al. The Neuropsychiatric Inventory: Comprehensive assessment of psychopathology in dementia. Neurology 1994;44(12):2308-2308. doi: 10.1212/WNL.44.12.2308.
27. Akca Kalem S, Hanagasi H, Cumming J, et al. Validation study of the Turkish translation of the Neuropsychiatric Inventory (NPE). 2005; In abstract book p.58, poster no 47. Presented at the 21 st international conference of Alzheimer’s Disease international, İstanbul.
28. Collin C, Wade DT, Davies S, et al. The Barthel ADL index: A reliability study. International Disability Studies 1988;10(2):61-63. doi: 10.3109/09638288809164103.
29. Küçükdeveci AA, Yavuzer G, Tennant A, et al. Adaptation of the modified Barthel Index for use in physical medicine and rehabilitation in Turkey. Scandinavian Journal of Rehabilitation Medicine 2000;32(2):87-92.
30. Hughes CP, Berg L, Danziger W, et al. A new clinical scale for the staging of dementia. The British Journal of Psychiatry 1982;140(6):566-572. doi: 10.1192/bjp.140.6.566.
31. Polit DF, Beck CT. (2008). Nursing research: Generating and assessing evidence for nursing practice (8th ed.). New York : J. B. Lippincott. p.73.
32. Wawrziczny E, Pasquier F, Ducharme F, et al. Do spouse caregivers of young and older persons with dementia have different needs? A comparative study. Psychogeriatrics 2017;17(5):282-291. doi:10.1111/psyg.12234.
33. Roach P, Drummond N. ‘It's nice to have something to do’: Early‐onset dementia and maintaining purposeful activity. Journal of Psychiatric and Mental Health Nursing 2014;21(10):889-895. doi:10.1111/jpm.12154.
34. Harris PB, Keady J. Living with early onset dementia: exploring the experience and developing evidence-based guidelines for practice. Alzheimer's Care Today 2004;5(2):111-122.
35. Reed C, Belger M, Dell'Agnello G, et al. Caregiver burden in Alzheimer’s disease: Differential associations in adult–child and spousal caregivers in the GERAS observational study. Dementia and Geriatric Cognitive Disorders Extra 2014;4:51–64. doi:10.1159/000358234
36. Committee on Family Caregiving for Older Adults; Board on Health Care Services; Health and Medicine Division; National Academies of Sciences, Engineering, and Medicine; Schulz R, Eden J, editors. Families Caring for an Aging America. Washington (DC): National Academies Press (US); 2016 Nov 8. 3, Family Caregiving Roles and Impacts. Available from: https://www.ncbi.nlm.nih.gov/books/NBK396398/. p.1-345.
37. Kimura NR, Maffioletti VL, Santos RL, et al. Psychosocial impact of early onset dementia among caregivers. Trends in Psychiatry and Psychotherapy 2015;37(4):213-219. doi:10.1590/2237-6089-2015-003.
38. Family Caregiver Alliance (FCA) by Donna Schempp. Access link: https://www.caregiver.org/resource/emotional-side-caregiving/ Access date: 16.06.2022.
39. Wimo A, Guerche M, Ali GC, et al. The worldwide costs of dementia2015 and comparisons with 2010. Alzheimer's & Dementia 2017;13(1):1‐7 doi: 10.1016/j.jalz.2016.07.150.
40. Ducharme F, Lachance L, Kergoat MJ, et al. (2016). A comparative descriptive study of characteristics of early-and late-onset dementia family caregivers. Alzheimer's Disease & Other Dementias® 2016;31(1):48-56. doi:10.1177/ 1533317515578255.

Erken ve Geç Başlangıçlı Alzheimer Hastalığının Bakım Veren Yükü Üzerine Etkisi

Year 2023, Volume: 17 Issue: 1, 79 - 86, 31.03.2023

Merve Aliye Akyol Burcu Akpınar Söylemez Özlem Küçükgüçlü

https://doi.org/10.21763/tjfmpc.1132131

Abstract

Giriş: Alzheimer hastalığı (AH), demansın en sık görülen tipidir. Görülme yaşı 65 yaş altındaki bireyleri etkilediğinde erken başlangıçlı AH (EBAH) olarak adlandırılmakta olup tanı konulan birçok kişi 40’lı ve 50’li yaşlarındadır. Literatürdeki birçok çalışma geç başlangıçlı AH (GBAH) olan bireylere bakım verenlerin bakım veren yükünü incelemekte olup bakım verme deneyiminin AH’nin başlangıç yaşına göre farklılık gösterip göstermediğine ilişkin belirsizlik sürmektedir. Amaç: Bu çalışma, toplumda yaşayan AH’li bireylere primer informal bakım verenlerin bakım veren yüklerinde hastalığın başlangıç yaşına göre farklılık olup olmadığının belirlenmesi amacıyla yapılmıştır. Yöntem: Bu çalışmada karşılaştırmalı tanımlayıcı araştırma deseni kullanılmıştır. Araştırmanın örneklemini 109 AH’li birey (34 EBAH ve 75 GBAH) ve bakım verenleri oluşturmaktadır. Veriler; sosyodemografik özellikler formu, Bakım Verenlerin Yükü Envanteri, Mini Mental Durum Testi, Nöropsikiyatrik Envanter, Barthel Günlük Yaşam Aktiviteleri ölçeği ve Klinik Demans Derecelendirme Ölçeği kullanılarak toplanmıştır. Verilerin değerlendirilmesinde tanımlayıcı istatistikler, t test ve ki-kare analizi kullanılmıştır. Bulgular: EBAH’lı bireylere bakım verenlerin sosyal yük puan ortalamalarının GBAH’lı bireylere bakım verenlere göre daha yüksek olduğu bulunmuştur (t=3,156, p=0,002). Ayrıca, EBAH’lı bireylere bakım verenler daha fazla gelişimsel, fiziksel ve toplam yük yaşamaktadır. Ancak istatistiksel olarak anlamlı farklılıklar oluşturmamaktadır (p>0,05). Sonuç: AH’nin başlangıç yaşına göre bakım veren yükünde farklılıklar olacağı göz önünde bulundurularak bakım verenlerin ihtiyaçlarına göre uyarlanmış hizmetlerin sunulması gerekmektedir.

Keywords

Alzheimer Hastalığı, demans, bakım veren yükü

Project Number

yoktur

References

1. Alzheimer’s Association 2020. Access link: https://www.alz.org/alzheimers-dementia/what-is-alzheimers/younger-early-onset Access date:16.06.2022.
2. Johannessen A, Möller, A. Experiences of persons with early-onset dementia in everyday life: A qualitative study. Dementia 2013;12(4):410-424. doi:10.1177/1471301211430647.
3. Rossor MN, Fox NC, Mummery CJ, et al. The diagnosis of young-onset dementia. The Lancet Neurology 2010;9(8):793-806. doi:10.1016/S1474-4422(10)70159-9.
4. van Vliet D, de Vugt ME, Bakker C, et al. Impact of early onset dementia on caregivers: A review. International Journal of Geriatric Psychiatry 2010;25(11):1091-1100. doi:10.1002/gps. 2439.
5. Shrestha R, Wuerz T, Appleby BS. Rapidly progressive young-onset dementias. Psychiatric Clinics 2015,38(2):221-232. doi:10.1016/j.psc.2015.01.001.
6. Jefferies K, Agrawal N. Early-onset dementia. Advances in Psychiatric Treatment 2009;15(5):380-388. doi:10.1192/apt.bp.107.004572.
7. Stanley K, Walker Z. Do patients with young onset Alzheimer's disease deteriorate faster than those with late onset Alzheimer's disease? A review of the literature. International Psychogeriatrics 2014;26(12):1945-1953. doi: 10.1017/S1041610214001173.
8. Van Vliet D, De Vugt ME, Bakker C, et al. Time to diagnosis in young-onset dementia as compared with late-onset dementia. Psychological Medicine 2013;43(2):423-432. doi: 10.1017/S0033291712001122.
9. Ducharme F, Kergoat MJ, Antoine P, et al. The unique experience of spouses in early-onset dementia. American Journal of Alzheimer's Disease & Other Dementias® 2013;28:634-641. doi:10.1177/1533317513494443.
10. Dourado MCN, Laks J, Kimura NR, et al. Young‐onset Alzheimer dementia: a comparison of Brazilian and Norwegian carers' experiences and needs for assistance. International Journal of Geriatric Psychiatry 2018;33(6):824-831. doi: 10.1002/gps.4717.
11. Kaiser S, Panegyres PK. The psychosocial impact of young onset dementia on spouses. American Journal of Alzheimer's Disease & Other Dementias® 2007;21(6):398-402. doi:10.1177/1533317506293259.
12. Millenaar JK, Bakker C, van Vliet D, et al. Exploring perspectives of young onset dementia caregivers with high versus low unmet needs. International Journal of Geriatric Psychiatry 2018;33(2):340-347. doi:10.1002/gps.4749.
13. Bakker C, de Vugt ME, van Vliet D, et al. Unmet needs and health-related quality of life in young-onset dementia. The American Journal of Geriatric Psychiatry 2014;22(11):1121-1130. doi:10.1016/j.jagp. 2013.02.006.
14. Miranda-Castillo C, Woods B, Galboda K, et al. Unmet needs, quality of life and support networks of people with dementia living at home. Health and Quality of Life Outcomes 2010;8,132. doi:10.1186/1477-7525-8-132.
15. Gaugler JE, Kane RL, Kane RA, et al. The effects of duration of caregiving on institutionalization. The Gerontologist 2005;45(1):78-89. doi:10.1093/geront/45.1.78.
16. Conde-Sala JL, Reñé-Ramírez R, Turró-Garriga O, et al. Factors associated with the variability in caregiver assessments of the capacities of patients with Alzheimer disease. Journal of Geriatric Psychiatry and Neurology 2013;26(2):86-94. doi:10.1177/0891988713481266.
17. Gronning H, Kristiansen S, Dyre D, et al. Caregiver burden and psychosocial services in patients with early and late onset Alzheimer’s disease. Danish Medical Journal 2013;60(7):A4649.
18. Millenaar JK, de Vugt ME, Bakker C, et al. The impact of young onset dementia on informal caregivers compared to late onset dementia: results from the NeedYD study. The American Journal of Geriatric Psychiatry 2016;24:467–474. doi:10.1016/j.jagp.2015.07.005. doi: 10.1111/psyg.12556.
19. Wang VW, Kandiah N, Lin X, Wee HL. Does health-related quality of life in Asian informal caregivers differ between early-onset dementia and late-onset dementia? Psychogeriatrics. 2020 Sep;20(5):608-619. doi: 10.1111/psyg.12556.
20. Lim L, Zhang A, Lim L, et al. High caregiver burden in young onset dementia:What factors need attention? Journal of Alzheimer's Disease 2018;61(2):537-543. doi:10.3233/JAD-170409.
21. McKhann GM, Knopman DS, Chertkow H, et al. The diagnosis of dementia due to Alzheimer’s disease: Recommendations from the National Institute on Aging-Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer's disease. Alzheimer's & Dementia 2011;7(3):263-269. doi: 10.1016/j.jalz.2011.03.005.
22. Novak M, Guest C. (1989). Application of a multidimensional caregiver burden inventory. The gerontologist 1989;29(6):798-803. doi:10.1093/geront/29.6.798.
23. Küçükgüçlü Ö, Esen A, Yener G. The reliability and validity of the caregiver burden inventory in Turkey. Journal of Neurological Sciences (Turkish) 2009;26(1):60-73.
24. Folstein MF, Robins LN, Helzer JE. The mini-mental state examination. Archives of General Psychiatry 1983;140(7),:812. doi: 10.1001/archpsyc.1983.01790060110016.
25. Güngen C, Ertan T, Eker E, et al. Reliability and validity of the standardized Mini Mental State Examination in the diagnosis of mild dementia in Turkish population. Turkish Journal of Psychiatry 2002;13(4):273-281.
26. Cummings JL, Mega M, Gray K, et al. The Neuropsychiatric Inventory: Comprehensive assessment of psychopathology in dementia. Neurology 1994;44(12):2308-2308. doi: 10.1212/WNL.44.12.2308.
27. Akca Kalem S, Hanagasi H, Cumming J, et al. Validation study of the Turkish translation of the Neuropsychiatric Inventory (NPE). 2005; In abstract book p.58, poster no 47. Presented at the 21 st international conference of Alzheimer’s Disease international, İstanbul.
28. Collin C, Wade DT, Davies S, et al. The Barthel ADL index: A reliability study. International Disability Studies 1988;10(2):61-63. doi: 10.3109/09638288809164103.
29. Küçükdeveci AA, Yavuzer G, Tennant A, et al. Adaptation of the modified Barthel Index for use in physical medicine and rehabilitation in Turkey. Scandinavian Journal of Rehabilitation Medicine 2000;32(2):87-92.
30. Hughes CP, Berg L, Danziger W, et al. A new clinical scale for the staging of dementia. The British Journal of Psychiatry 1982;140(6):566-572. doi: 10.1192/bjp.140.6.566.
31. Polit DF, Beck CT. (2008). Nursing research: Generating and assessing evidence for nursing practice (8th ed.). New York : J. B. Lippincott. p.73.
32. Wawrziczny E, Pasquier F, Ducharme F, et al. Do spouse caregivers of young and older persons with dementia have different needs? A comparative study. Psychogeriatrics 2017;17(5):282-291. doi:10.1111/psyg.12234.
33. Roach P, Drummond N. ‘It's nice to have something to do’: Early‐onset dementia and maintaining purposeful activity. Journal of Psychiatric and Mental Health Nursing 2014;21(10):889-895. doi:10.1111/jpm.12154.
34. Harris PB, Keady J. Living with early onset dementia: exploring the experience and developing evidence-based guidelines for practice. Alzheimer's Care Today 2004;5(2):111-122.
35. Reed C, Belger M, Dell'Agnello G, et al. Caregiver burden in Alzheimer’s disease: Differential associations in adult–child and spousal caregivers in the GERAS observational study. Dementia and Geriatric Cognitive Disorders Extra 2014;4:51–64. doi:10.1159/000358234
36. Committee on Family Caregiving for Older Adults; Board on Health Care Services; Health and Medicine Division; National Academies of Sciences, Engineering, and Medicine; Schulz R, Eden J, editors. Families Caring for an Aging America. Washington (DC): National Academies Press (US); 2016 Nov 8. 3, Family Caregiving Roles and Impacts. Available from: https://www.ncbi.nlm.nih.gov/books/NBK396398/. p.1-345.
37. Kimura NR, Maffioletti VL, Santos RL, et al. Psychosocial impact of early onset dementia among caregivers. Trends in Psychiatry and Psychotherapy 2015;37(4):213-219. doi:10.1590/2237-6089-2015-003.
38. Family Caregiver Alliance (FCA) by Donna Schempp. Access link: https://www.caregiver.org/resource/emotional-side-caregiving/ Access date: 16.06.2022.
39. Wimo A, Guerche M, Ali GC, et al. The worldwide costs of dementia2015 and comparisons with 2010. Alzheimer's & Dementia 2017;13(1):1‐7 doi: 10.1016/j.jalz.2016.07.150.
40. Ducharme F, Lachance L, Kergoat MJ, et al. (2016). A comparative descriptive study of characteristics of early-and late-onset dementia family caregivers. Alzheimer's Disease & Other Dementias® 2016;31(1):48-56. doi:10.1177/ 1533317515578255.

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Details

Primary Language	English
Subjects	Primary Health Care
Journal Section	Orijinal Articles
Authors	Merve Aliye Akyol 0000-0001-5107-266X Burcu Akpınar Söylemez 0000-0002-9643-0325 Özlem Küçükgüçlü 0000-0002-4771-1091
Project Number	yoktur
Publication Date	March 31, 2023
Submission Date	June 17, 2022
Published in Issue	Year 2023 Volume: 17 Issue: 1

Cite

Vancouver	Akyol MA, Akpınar Söylemez B, Küçükgüçlü Ö. Effects of Early- and Late-Onset Alzheimer’s Disease on Caregiver Burden. TJFMPC. 2023;17(1):79-86.

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English or Turkish manuscripts from authors with new knowledge to contribute to understanding and improving health and primary care are welcome.