The effect of structured education and phone follow-up on moderate stage Alzheimer's disease caregiving: Outcomes for patient and caregivers
Munevver Ozcan
Faculty of Health Sciences, Yozgat Bozok University, Yozgat, Turkey
Search for more papers by this authorCorresponding Author
Imatullah Akyar
Faculty of Nursing, Hacettepe University, Ankara, Turkey
Correspondence
İmatullah Akyar, Hacettepe University Faculty of Nursing, Adnan Saygun Street, D Block, 2nd Floor, Office No: 33-16, Sihhiye, Ankara, Turkey.
Email: [email protected]; [email protected]
Search for more papers by this authorMunevver Ozcan
Faculty of Health Sciences, Yozgat Bozok University, Yozgat, Turkey
Search for more papers by this authorCorresponding Author
Imatullah Akyar
Faculty of Nursing, Hacettepe University, Ankara, Turkey
Correspondence
İmatullah Akyar, Hacettepe University Faculty of Nursing, Adnan Saygun Street, D Block, 2nd Floor, Office No: 33-16, Sihhiye, Ankara, Turkey.
Email: [email protected]; [email protected]
Search for more papers by this authorAbstract
Aim
To determine the effectiveness of a caregiver education (needs tailored) and telephone follow-up intervention for caregivers of people with moderate stage Alzheimer's disease on caregiver burden, caregiving impact on life, and patients' neuropsychiatric symptoms, dependence on activities of daily living.
Methods
This quasi-experimental study sampled caregivers of people with moderate stage Alzheimer's. Caregivers in the intervention group received education and telephone follow-up over 12 weeks, while the control group received routine care. Caregivers were assessed for burden, changes in life, and patients for neuropsychiatric symptoms, and dependence on daily living activities.
Results
The caregiver burden, life changes, distress, and patients' neuropsychiatric symptom scores showed apparent trend toward betterment, but no statistically significant differences were found in study outcomes between the two groups (P > .05).
Conclusion
The caregiver need-based, structured education and telephone follow-up intervention was not empirically effective. With the promising effect from this study, managing behavioral symptoms with need-based, structured, and skill-oriented training has the potential to alleviate the burden on caregivers.
CONFLICT OF INTEREST STATEMENT
The authors declare no potential conflicts of interest.
REFERENCES
- Adams, K. B. (2006). The transition to caregiving: The experience of family members embarking on the dementia caregiving career. Journal of Gerontological Social Work, 47(3–4), 3–29. https://doi.org/10.1300/J083v47n03_02
- Adelman, R. D., Tmanova, L. L., Delgado, D., Dion, S., & Lachs, M. S. (2014). Caregiver burden: A clinical review. Jama, 311(10), 1052–1060. https://doi.org/10.1001/jama.2014.304
- Alzheimer's Association. (2020). Alzheimer's disease facts and figures. Alzheimers Dementia, 16, 391–460. https://doi.org/10.1002/alz.12068
- Armstrong, N. M., Gitlin, L. N., Parisi, J. M., Roth, D. L., & Gross, A. L. (2019). Association of physical functioning of persons with dementia with caregiver burden and depression in dementia caregivers: An integrative data analysis. Aging & Mental Health, 23(5), 587–594. https://doi.org/10.1080/13607863.2018.1441263
- Atoyebi, O., Eng, J. J., Routhier, F., Bird, M. L., & Mortenson, W. B. (2022). A systematic review of systematic reviews of needs of family caregivers of older adults with dementia. European Journal of Ageing, 19(3), 381–396. https://doi.org/10.1007/s10433-021-00680-0
- Ayhan, Y., Yoseph, S. A., & Miller, B. L. (2023). Management of Psychiatric Symptoms in dementia. Neurologic Clinics, 41(1), 123–139. https://doi.org/10.1016/j.ncl.2022.05.001
- Bakas, T. (2014). Bakas caregiving outcomes scale. In A. C. Michalos (Ed.), Encyclopedia of quality of life and well-being research (pp. 319–321). Springer. https://doi.org/10.1007/978-94-007-0753-5_143
10.1007/978-94-007-0753-5_143 Google Scholar
- Bédard, M., Molloy, D. W., Squire, L., Dubois, S., Lever, J. A., & O'Donnell, M. (2001). The Zarit burden interview: A new short version and screening version. The Gerontologist, 41(5), 652–657. https://doi.org/10.1093/geront/41.5.652
- Brodaty, H., & Donkin, M. (2022). Family caregivers of people with dementia. Dialogues in Clinical Neuroscience, 11(2), 217–228. https://doi.org/10.31887/DCNS.2009.11.2/hbrodaty
10.31887/DCNS.2009.11.2/hbrodaty Google Scholar
- Brodaty, H., Green, A., & Koschera, A. (2003). Meta-analysis of psychosocial interventions for caregivers of people with dementia. Journal of the American Geriatrics Society, 51(5), 657–664. https://doi.org/10.1034/j.1600-0579.2003.00210.x
- Chen, Y. J., Su, J. A., Chen, J. S., Liu, C. H., Griffiths, M. D., Tsai, H. C., Chang, C. C., & Lin, C. Y. (2023). Examining the association between neuropsychiatric symptoms among people with dementia and caregiver mental health: Are caregiver burden and affiliate stigma mediators? BMC Geriatrics, 23(1), 27. https://doi.org/10.1186/s12877-023-03735-2
- Chiao, C. Y., Wu, H. S., & Hsiao, C. Y. (2015). Caregiver burden for informal caregivers of patients with dementia: A systematic review. International Nursing Review, 62(3), 340–350. https://doi.org/10.1111/inr.12194
- Cummings, J. L., Mega, M., Gray, K., Rosenberg-Thompson, S., Carusi, D. A., & Gornbein, J. (1994). The neuropsychiatric inventory: Comprehensive assessment of psychopathology in dementia. Neurology, 44(12), 2308–2314. https://doi.org/10.1212/wnl.44.12.2308
- Dickinson, C., Dow, J., Gibson, G., Hayes, L., Robalino, S., & Robinson, L. (2017). Psychosocial intervention for carers of people with dementia: What components are most effective and when? A systematic review of systematic reviews. International Psychogeriatrics, 29(1), 31–43. https://doi.org/10.1017/S1041610216001447
- Forester, B. P., & Vahia, I. (2019). Behavioral and psychological symptoms—An emerging crisis of the Alzheimer dementia epidemic. JAMA Network Open, 2(3), e190790-e190790. https://doi.org/10.1001/jamanetworkopen.2019.0790
- Hedayatjoo, M., Doost, M. T., Vahabi, Z., Akbarfahimi, M., & Khosrowabadi, R. (2023). Comparison of cognitive functions between patients with Alzheimer disease, patients with mild cognitive impairment, and healthy people. Archives of Neuroscience, 10(1), e131408. https://doi.org/10.5812/ans-131408
- Holt Clemmensen, T., Hein Lauridsen, H., Andersen-Ranberg, K., & Kaae Kristensen, H. (2021). Informal carers' support needs when caring for a person with dementia–a scoping literature review. Scandinavian Journal of Caring Sciences, 35(3), 685–700. https://doi.org/10.1111/scs.12898
- Isik, A. T., Soysal, P., Solmi, M., & Veronese, N. (2019). Bidirectional relationship between caregiver burden and neuropsychiatric symptoms in patients with Alzheimer's disease: A narrative review. International Journal of Geriatric Psychiatry, 34(9), 1326–1334. https://doi.org/10.1002/gps.4965
- Kawaharada, R., Sugimoto, T., Matsuda, N., Tsuboi, Y., Sakurai, T., & Ono, R. (2019). Impact of loss of independence in basic activities of daily living on caregiver burden in patients with Alzheimer's disease: A retrospective cohort study. Geriatrics & Gerontology International, 19(12), 1243–1247. https://doi.org/10.1111/ggi.13803
- J. S. Kreutzer, J. DeLuca, & B. Caplan (Eds.). (2011). Encyclopedia of clinical neuropsychology (pp. 1113–1115). Springer. https://doi.org/10.1007/978-0-387-79948-3
10.1007/978-0-387-79948-3_1607 Google Scholar
- Lee, K., Puga, F., Pickering, C. E., Masoud, S. S., & White, C. L. (2019). Transitioning into the caregiver role following a diagnosis of Alzheimer's disease or related dementia: A scoping review. International Journal of Nursing Studies, 96, 119–131. https://doi.org/10.1016/j.ijnurstu.2019.02.007
- Lee, S. J., Seo, H. J., Choo, I. H., Kim, S. M., Park, J. M., Yang, E. Y., & Choi, Y. M. (2022). Evaluating the effectiveness of community-based dementia caregiver intervention on caregiving burden, depression, and attitude toward dementia: A quasi-experimental study. Clinical Interventions in Aging, 17, 937–946. https://doi.org/10.2147/CIA.S361071
- Mansfield, E., Cameron, E. C., Boyes, A. W., Carey, M. L., Nair, B., Hall, A. E., & Sanson-Fisher, R. W. (2022). Prevalence and type of unmet needs experienced by carers of people living with dementia. Aging & Mental Health, 1-7, 904–910. https://doi.org/10.1080/13607863.2022.2053833
10.1080/13607863.2022.2053833 Google Scholar
- Moore, K. J., Lee, C. Y., Sampson, E. L., & Candy, B. (2020). Do interventions that include education on dementia progression improve knowledge, mental health, and burden of family carers? A systematic review. Dementia, 19(8), 2555–2581. https://doi.org/10.1177/1471301219831530
- Neumann, P. J., Araki, S. S., Arcelus, A., Longo, A., Papadopoulos, G., Kosik, K. S., Kuntz, K. M., & Bhattacharjya, A. (2001). Measuring Alzheimer's disease progression with transition probabilities: Estimates from CERAD. Neurology, 57(6), 957–964. https://doi.org/10.1212/wnl.57.6.957
- Ozcan, M., & Akyar, İ. (2021). Caregivers' experiences of patients with moderate-stage Alzheimer's disease: A qualitative study. Psychogeriatrics, 21(5), 763–772. https://doi.org/10.1111/psyg.12736
- Smith, L., Morton, D., & van Rooyen, D. (2022). Family dynamics in dementia care: A phenomenological exploration of the experiences of family caregivers of relatives with dementia. Journal of Psychiatric and Mental Health Nursing, 29(6), 861–872. https://doi.org/10.1111/jpm.12822
- Soong, A., Au, S. T., Kyaw, B. M., Theng, Y. L., & Tudor Car, L. (2020). Information needs and information seeking behaviour of people with dementia and their non-professional caregivers: A scoping review. BMC Geriatrics, 20(1), 1–17. https://doi.org/10.1186/s12877-020-1454-y
- Sun, Y., Ji, M., Leng, M., Li, X., Zhang, X., & Wang, Z. (2022). Comparative efficacy of 11 non-pharmacological interventions on depression, anxiety, quality of life, and caregiver burden for informal caregivers of people with dementia: A systematic review and network meta-analysis. International Journal of Nursing Studies, 129, 104204. https://doi.org/10.1016/j.ijnurstu.2022.104204
- Terayama, H., Sakurai, H., Namioka, N., Jaime, R., Otakeguchi, K., Fukasawa, R., Sato, T., Hirao, K., Kanetaka, H., Shimize, S., Umahara, T., & Hanyu, H. (2018). Caregivers' education decreases depression symptoms and burden in caregivers of patients with dementia. Psychogeriatrics, 18(5), 327–333. https://doi.org/10.1111/psyg.12337
- Terum, T. M., Andersen, J. R., Rongve, A., Aarsland, D., Svendsboe, E. J., & Testad, I. (2017). The relationship of specific items on the neuropsychiatric inventory to caregiver burden in dementia: A systematic review. International Journal of Geriatric Psychiatry, 32(7), 703–717. https://doi.org/10.1002/gps.4704
- Vaingankar, J. A., Chong, S. A., Abdin, E., Picco, L., Jeyagurunathan, A., Zhang, Y., Sambasivam, R., Chua, B. Y., Ng, L. L., Prince, M., & Subramaniam, M. (2016). Care participation and burden among informal caregivers of older adults with care needs and associations with dementia. International Psychogeriatrics, 28(2), 221–231. https://doi.org/10.1017/S104161021500160X
- Villars, H., Cantet, C., de Peretti, E., Perrin, A., Soto-Martin, M., & Gardette, V. (2021). Impact of an educational programme on Alzheimer's disease patients' quality of life: Results of the randomized controlled trial THERAD. Alzheimer's Research & Therapy, 13(1), 152. https://doi.org/10.1186/s13195-021-00896-3
- Walter, E., & Pinquart, M. (2020). How effective are dementia caregiver interventions? An updated comprehensive meta-analysis. The Gerontologist, 60(8), e609–e619. https://doi.org/10.1093/geront/gnz118
- Wawrziczny, E., Pasquier, F., Ducharme, F., Kergoat, M. J., & Antoine, P. (2016). From 'needing to know' to 'needing not to know more': An interpretative phenomenological analysis of couples' experiences with early-onset Alzheimer's disease. Scandinavian Journal of Caring Sciences, 30(4), 695–703. https://doi.org/10.1111/scs.12290
- Whitlatch, C. J., & Orsulic-Jeras, S. (2018). Meeting the informational, educational, and psychosocial support needs of persons living with dementia and their family caregivers. The Gerontologist, 58(suppl_1), S58–S73. https://doi.org/10.1093/geront/gnx162
- Williams, F., Moghaddam, N., Ramsden, S., & De Boos, D. (2019). Interventions for reducing levels of burden amongst informal carers of persons with dementia in the community: A systematic review and meta-analysis of randomized controlled trials. Aging & Mental Health, 23(12), 1629–1642. https://doi.org/10.1080/13607863.2018.1515886
- World Health Organization. (2019). iSupport for dementia: Training and support manual for carers of people with dementia. https://www.who.int/publications/i/item/9789241515863
- Yuan, Q., Tan, T. H., Wang, P., Devi, F., Ong, H. L., Abdin, E., Harish, M., Goveas, R., Ng, L. L., Chong, S. A., & Subramaniam, M. (2020). Staging dementia based on caregiver reported patient symptoms: Implications from a latent class analysis. PLoS One, 15(1), e0227857. https://doi.org/10.1371/journal.pone.0227857
- Zarit, S. H., & Zarit, J. M. (1990). The memory and behavior problems checklist and the burden interview. The Pennsylvania State University.