Determinants of self- and carer-rated quality of life and caregiver burden in Alzheimer disease.
Alzheimer disease
behavioural and psychological symptoms
caregiver burden
dementia
quality of life
Journal
International journal of geriatric psychiatry
ISSN: 1099-1166
Titre abrégé: Int J Geriatr Psychiatry
Pays: England
ID NLM: 8710629
Informations de publication
Date de publication:
10 2019
10 2019
Historique:
received:
07
01
2019
accepted:
20
04
2019
pubmed:
27
4
2019
medline:
14
3
2020
entrez:
27
4
2019
Statut:
ppublish
Résumé
We aimed to investigate factors associated with self- and carer-rated quality of life (QoL) and caregiver burden related to very mild to severe clinical Alzheimer disease (AD). One hundred patient-carer dyads were recruited, and assessments of relevant outcomes were performed, including sociodemographic characteristics, QoL, activities of daily living (ADL), cognitive performance, behavioural and psychological symptoms of dementia (BPSD), caregiver burden, and health resource utilisation. There was a strong correlation between carer- and self-rated QoL, with patients consistently rating their QoL higher than caregivers. Duration of illness did not affect the QoL ratings. There was an inverse association between both self- and carer-rated QoL with age, age at symptom onset, impairment of ADL, time spent on assisting the patient, and depression. Both self- and carer-rated QoL ratings were higher if the caregiver was a spouse vs a child. Carer-rated QoL was inversely associated with severity of dementia, BPSD, caregiver burden, and requirement to supervise the patient. The variables age at symptom onset, ADL, and living together with the primary caregiver explained 34.50% of the variance in self-rated QoL, whereas age at symptom onset, ADL, and BPSD explained 48.20% of the variance in carer-rated QoL. For caregiver burden, 26% of the variance was explained by the variables ADL, living together with the primary caregiver, and agitation. Our study highlights the need for a stronger focus on QoL in clinical AD research by providing further pieces of evidence on the key determinants, including the important aspect of caregiver burden.
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
1378-1385Commentaires et corrections
Type : CommentIn
Informations de copyright
© 2019 John Wiley & Sons, Ltd.
Références
Wimo A, Guerchet M, Ali GC, et al. The worldwide costs of dementia 2015 and comparisons with 2010. Alzheimers Dement. 2017;13(1):1-7.
Banerjee S, Smith SC, Lamping DL, et al. Quality of life in dementia: more than just cognition. An analysis of associations with quality of life in dementia. J Neurol Neurosurg Psychiatry. 2006;77(2):146-148.
Farina N, Page TE, Daley S, et al. Factors associated with the quality of life of family carers of people with dementia: a systematic review. Alzheimers Dement. 2017;13(5):572-581.
Webster L, Groskreutz D, Grinbergs-Saull A, et al. Core outcome measures for interventions to prevent or slow the progress of dementia for people living with mild to moderate dementia: systematic review and consensus recommendations. PLoS ONE. 2017;12(6):e0179521.
Webster L, Groskreutz D, Grinbergs-Saull A, et al. Development of a core outcome set for disease modification trials in mild to moderate dementia: a systematic review, patient and public consultation and consensus recommendations. Health Technol Assess. 2017;21(26):1-192.
Buckley T, Fauth EB, Morrison A, et al. Predictors of quality of life ratings for persons with dementia simultaneously reported by patients and their caregivers: the Cache County (Utah) Study. Int Psychogeriatr. 2012;24(7):1094-1102.
Hoe J, Katona C, Orrell M, Livingston G. Quality of life in dementia: care recipient and caregiver perceptions of quality of life in dementia: the LASER-AD study. Int J Geriatr Psychiatry. 2007;22(10):1031-1036.
Novella JL, Jochum C, Jolly D, et al. Agreement between patients' and proxies' reports of quality of life in Alzheimer's disease. Qual Life Res. 2001;10(5):443-452.
Park MH, Smith SC, Hendriks AAJ, Black N. Caregiver burden and quality of life two years after attendance at a memory clinic. Int J Geriatr Psychiatry. 2018 Dec 17. https://doi.org/10.1002/gps.5053. [Epub ahead of print].
Alltag S, Conrad I, Riedel-Heller SG. Caregiver burden among older informal caregivers of patients with dementia and its influence on quality of life: a systematic literature review. Z Gerontol Geriatr. 2018 Jul 10. https://doi.org/10.1007/s00391-018-1424-6. [Epub ahead of print].
Srivastava G, Tripathi RK, Tiwari SC, Singh B, Tripathi SM. Caregiver burden and quality of life of key caregivers of patients with dementia. Indian J Psychol Med. 2016;38(2):133-136.
Schiffczyk C, Romero B, Jonas C, Lahmeyer C, Muller F, Riepe MW. Generic quality of life assessment in dementia patients: a prospective cohort study. BMC Neurol. 2010;10(1):48.
Vogel A, Stokholm J, Gade A, Andersen BB, Hejl AM, Waldemar G. Awareness of deficits in mild cognitive impairment and Alzheimer's disease: do MCI patients have impaired insight? Dement Geriatr Cogn Disord. 2004;17(3):181-187.
Jonsson L, Lin PJ, Khachaturian AS. Special topic section on health economics and public policy of Alzheimer's disease. Alzheimers Dement. 2017;13(3):201-204.
McKhann G, Drachman D, Folstein M, Katzman R, Price D, Stadlan EM. Clinical diagnosis of Alzheimer's disease: report of the NINCDS-ADRDA Work Group under the auspices of Department of Health and Human Services Task Force on Alzheimer's Disease. Neurol. 1984;34(7):939-944.
Morris JC. The clinical dementia rating (CDR): current version and scoring rules. Neurol. 1993;43(11):2412-2414.
Welsh KA, Butters N, Mohs RC, et al. The Consortium to Establish a Registry for Alzheimer's Disease (CERAD). Part V. A normative study of the neuropsychological battery. Neurol. 1994;44(4):609-614.
Folstein MF, Folstein SE, McHugh PR. “Mini-mental state”. A practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res. 1975;12(3):189-198.
Logsdon RG, Gibbons LE, McCurry SM, Teri L. Assessing quality of life in older adults with cognitive impairment. Psychosom Med. 2002;64(3):510-519.
Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist. 1980;20(6):649-655.
Cummings JL. The Neuropsychiatric Inventory: assessing psychopathology in dementia patients. Neurol. 1997;48(5 Suppl 6):S10-S16.
Hindmarch I, Lehfeld H, de Jongh P, Erzigkeit H. The Bayer Activities of Daily Living Scale (B-ADL). Dement Geriatr Cogn Disord. 1998;9(Suppl 2):20-26.
Wimo A, Winblad B. Resource utilisation in dementia: RUD Lite. Brain Aging. 2003;3:48-59.
Jack CR Jr, Bennett DA, Blennow K, et al. NIA-AA research framework: toward a biological definition of Alzheimer's disease. Alzheimers Dement. 2018;14(4):535-562.
Kahle-Wrobleski K, Ye W, Henley D, et al. Assessing quality of life in Alzheimer's disease: implications for clinical trials. Alzheimers Dement (Amst). 2017;6:82-90.
Conde-Sala JL, Rene-Ramirez R, Turro-Garriga O, et al. Clinical differences in patients with Alzheimer's disease according to the presence or absence of anosognosia: implications for perceived quality of life. J Alzheimers Dis. 2013;33(4):1105-1116.
Weber K, Canuto A, Giannakopoulos P, et al. Personality, psychosocial and health-related predictors of quality of life in old age. Aging Ment Health. 2015;19(2):151-158.
Lorem GF, Schirmer H, Wang CE, Emaus N. Ageing and mental health: changes in self-reported health due to physical illness and mental health status with consecutive cross-sectional analyses. BMJ Open. 2017;7(1):e013629.
Conde-Sala JL, Garre-Olmo J, Turro-Garriga O, Vilalta-Franch J, Lopez-Pousa S. Quality of life of patients with Alzheimer's disease: differential perceptions between spouse and adult child caregivers. Dement Geriatr Cogn Disord. 2010;29(2):97-108.
Conde-Sala JL, Garre-Olmo J, Turro-Garriga O, Lopez-Pousa S, Vilalta-Franch J. Factors related to perceived quality of life in patients with Alzheimer's disease: the patient's perception compared with that of caregivers. Int J Geriatr Psychiatry. 2009;24(6):585-594.
Feast A, Moniz-Cook E, Stoner C, Charlesworth G, Orrell M. A systematic review of the relationship between behavioral and psychological symptoms (BPSD) and caregiver well-being. Int Psychogeriatr. 2016;28(11):1761-1774.
Torrisi M, De Cola MC, Marra A, De Luca R, Bramanti P, Calabro RS. Neuropsychiatric symptoms in dementia may predict caregiver burden: a Sicilian exploratory study. Psychogeriatrics. 2017;17(2):103-107.
Hiyoshi-Taniguchi K, Becker CB, Kinoshita A. What behavioral and psychological symptoms of dementia affect caregiver burnout? Clin Gerontol. 2018;41(3):249-254.
Bleijlevens MH, Stolt M, Stephan A, et al. Changes in caregiver burden and health-related quality of life of informal caregivers of older people with dementia: evidence from the European RightTimePlaceCare prospective cohort study. J Adv Nurs. 2015;71(6):1378-1391.
Hongisto K, Hallikainen I, Selander T, et al. Quality of Life in relation to neuropsychiatric symptoms in Alzheimer's disease: 5-year prospective ALSOVA cohort study. Int J Geriatr Psychiatry. 2018;33(1):47-57.
Karttunen K, Karppi P, Hiltunen A, et al. Neuropsychiatric symptoms and quality of life in patients with very mild and mild Alzheimer's disease. Int J Geriatr Psychiatry. 2011;26(5):473-482.
Hongisto K, Vaatainen S, Martikainen J, et al. Self-rated and caregiver-rated quality of life in Alzheimer disease with a focus on evolving patient ability to respond to questionnaires: 5-year prospective ALSOVA cohort study. Am J Geriatr Psychiatry. 2015;23(12):1280-1289.
Bosboom PR, Almeida OP. Do changes in specific cognitive functions predict changes in health-related quality of life in people with Alzheimer's disease? Int J Geriatr Psychiatry. 2014;29(7):694-703.
Husebo BS, Ballard C, Aarsland D, et al. The effect of a multicomponent intervention on quality of life in residents of nursing homes: a randomized controlled trial (COSMOS). J Am Med Dir Assoc. 2019;20(3):330-339.
Abraha I, Rimland JM, Trotta FM, et al. Systematic review of systematic reviews of non-pharmacological interventions to treat behavioural disturbances in older patients with dementia. The SENATOR-OnTop series. BMJ Open. 2017;7(3):e012759.
Shin IS, Carter M, Masterman D, Fairbanks L, Cummings JL. Neuropsychiatric symptoms and quality of life in Alzheimer disease. Am J Geriatr Psychiatry. 2005;13(6):469-474.
Hessmann P, Seeberg G, Reese JP, et al. Health-related quality of life in patients with Alzheimer's disease in different German health care settings. J Alzheimers Dis. 2016;51(2):545-561.
Abdollahpour I, Nedjat S, Salimi Y. Positive aspects of caregiving and caregiver burden: a study of caregivers of patients with dementia. J Geriatr Psychiatry Neurol. 2018;31(1):34-38.