Improving Quality of Life in Caregivers of Alzheimer Dementia Patients- A Stepwise Approach
Keywords:
quality of life, caregivers’ burden, Alzheimer Dementia, resources management, therapeutic interventions
Abstract
Caregivers’ burden could have serious impact over social and professional functioning in adult and active population. Quality of life in caregivers of Alzheimer Disease (AD) patients should be monitored as an important indicator of their well-being and functional resources. The main objective of this research is to formulate a plan for the evaluation of the quality of life in caregivers of the AD patients as a first step in the recommendation of an adequate, stratified therapeutic intervention. Regarding the research methodology, the first step consisted in a review of the most validated instruments for caregiver status evaluation - SF-36, EuroQoL, Zarit Burden Interview (BI), Global Assessment of Functioning Scale (GAF), and Neuropsychiatric Inventory (NPI). A composite score (cs) could be calculated based on these scales, and 3 classes of quality of life impairment severity could be defined. The second step consists in recommendations regarding the monitoring of the caregivers’ status using the same instruments, and the formulation of therapeutic interventions according to the severity of quality of life impairments. It is expected that applying this algorithm would decrease the AD burden’s functional impact over caregivers, while increasing their quality of life. Learning new ways to cope with stress, a better management of their own time and engaging in changing coping methods during group therapy sessions are expected to have a significant impact over caregivers overall psychological status. In conclusion, a better care should be provided for AD patients’ caregivers, in order to increase their functionality and quality of life.
References
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[31] Matsushita M, Pai MC, Jhou CY et al. Cross-cultural study of caregiver burden for Alzheimer’s disease in Japan and Taiwan: result from Dementia Research in Kumamoto and Tainan (DeReKaT). Int Psychogeriatr 2016;28(7):1125-32.
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[33] Mougias AA, Politis A, Mougias MA et al. The burden of caring for patients with dementia and its predictors. Psychiatriki 2015;26(1):28-37.
[34] Vellas B, Hausner L, Frolich L et al. Progression of Alzheimer disease in Europe: data from the European ICTUS study. Curr Alzheimer Res 2012;9(8):902-12.
[35] Nogueira MM, Neto JP, Sousa MF et al. Spouse-caregivers’ quality of life in Alzheimer’s disease. Int Psychogeriatr 2015;27(5):837-45.
[36] Dauphinot V, Delphin-Combe F, Mouchoux C et al. Risk factors of caregiver burden among patients with Alzheimer’s disease or related disorders: a cross-sectional study. J Alzheimers Dis 2015;44(3):907-16.
[37] Conde-Sala JL, Turro-Garriga O, Calvo-Perxas L et al. Three-year trajectories of caregiver burden in Alzheimer’s disease. J Alzheimers Dis 2014;42(2):623-33.
[38] Kamiya M, Sakurai T, Ogama N et al. Factors associated with increased caregivers’ burden in several cognitive stages of Alzheimer’s disease. Geriatr Gerontol Int 2014;14(Suppl.2):45-55.
[39] Miller LA, Mioshi E, Savage S et al. Identifying cognitive and demographic variables that contribute to carer burden in dementia. Dement Geriatr Cogn Disord 2013;36(1-2):43-9.
[40] Hashimoto M, Yatabe Y, Kaneda K et al. Impact of donepezil hydrochloride on the care burden of family caregivers of patients with Alzheimer’s disease. Psychogeriatrics 2009;9(4):196-203.
[41] Cummings JL. The Neuropsychiatric Inventory: assessing psychopathology in dementia patients. Neurology 1997;48(Suppl.6):S10-S16.
[42] Connor DJ, Sabbagh MN, Cummings JL. Comment on administration and scoring of the Neuropsychiatric Inventory (NPI) in clinical trials. Alzheimers Dement 2008;4(6):390-394.
[43] Tormalehto S, Martikainen J, Bell JS et al. Use of psychotropic medications in relation to neuropsychiatric symptoms, cognition and functional performance in Alzheimer’s disease over a three-year period: Kuopio ALSOVA study. Int Psychogeriatr 2017:1-11.
[44] Ng KP, Pascoal TA, Mathotaarachchi S et al. Neuropsychiatric symptoms predict hypometabolism in preclinical Alzheimer disease. Neurology 2017;88(19):1814-1821.
[45] Hyde AJ, May BH, Xue CC, Zhang AL. Variation in placebo effect size in clinical trials of oral interventions for management of the behavioral and psychological symptoms of dementia (BPSD): A systematic review and metaanalysis. Am J Geriatr Psychiatry 2017. pii: S1064-7481(17)30242-7.
[46] 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 2017. doi:10.1002/gps.4666.
[47] Li M, Huang H, Jiang G et al. Change patterns, influencing factors and predictors of quality of life in patients with Alzheimer’s disease. Zhonghua Yi Xue Za Zhi 2015;95(5):1131-4.
[48] Conde-Sala JL, Turro-Garriga O, Pinan-Hernandez S et al. Effects of anosognosia and neuropsychiatric symptoms on the quality of life of patients with Alzheimer’s disease: A 24-month follow-up study. Int J Geriatr Psychiatry 2016;31(2):109-19.
[49] American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (DSM-IV-TR) Washington, DC, USA: American Psychiatric Association; 2000.
[50] Greenberg GA, Rosenheck RA. Using the GAF as a national mental health outcome measure in the Department of Veterans Affairs. Psychiatr Serv 2005;56(4):420-6.
[2] Sallim AB, Sayampanathan AA, Cuttilan A, Chun-Man Ho R. Prevalence of mental health disorders among caregivers of patients of patients with Alzheimer Disease. J Am Med Dir Assoc 2015;16(12):1034-41.
[3] Khusaifan SJ, El Keshky ME. Social support as a mediator variable of the relationship between depression and life satisfaction in a sample of Saudi caregivers of patients with Alzheimer’s disease. Int Psychogeriatr 2017;29(2):239-248.
[4] Wenborn J, Hynes S, Moniz-Cook E et al. Community occupational therapy for people with dementia and family carers (COTiD-UK) versus treatment as usual (Valuing Active Life in Dementia (VALID) programme): study protocol for a randomised controlled trial. Trials 2016;17:65.
[5] Tarlov AR, Ware JE Jr, Greenfield S et al. The Medical Outcomes Study. An application of methods for monitoring the results of medical care. JAMA 1989;262(7):925-30.
[6] Ware JE Jr, Sherbourne CD. The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care 1992;30(6):473-83.
[7] De Pasquale C, Conti D, Pistorio ML et al. Comparison of the CBA-H and SF-36 for the screening of the psychological and behavioural variables in chronic dialysis patients. PLoS One 2017;12(6):e0180077.
[8] Beaudart C, Biver E, Bruyere O et al. Quality of life assessment in musculo-skeletal health. Aging Clin Exp Res 2017; doi:10.1007/s40520-017-0794-8.
[9] Bravo Vergel Y, Sculpher M. Quality-adjusted life years. Pract Neurol 2008;8(3):175-82.
[10] Garzon-Maldonado FJ, Gutierrez-Bedmar M, Garcia-Casares N et al. Health-related quality of life in caregivers of patients with Alzheimer’s disease. Neurologia 2016; pii:S0213-4853(16)30010-X.
[11] Yikilkan H, Aypak C, Gorpelioglu S. Depression, anxiety and quality of life in caregivers of long-term home care patients. Arch Psychiatr Nurs 2014;28(3):193-6.
[12] Machnicki G, Allegri RF, Ranalli CG et al. Validity and reliability of the SF-36 administered to caregivers of patients with Alzheimer’s disease: evidence from a south American sample. Dement Geriatr Cogn Disord 2009;28(3):206-12.
[13] Bell CM, Araki SS, Neumann PJ. The association between caregiver burden and caregiver health-related quality of life in Alzheimer disease. Alzheimer Dis Assoc Disord 2001;15(3):129-36.
[14] EuroQol Group. EuroQol- a new facility for the measurement of health-related quality of life. Health Policy 1990;16(3):199-208.
[15] Hounsome N, Orrell M, Edwards RT. EQ-5D as a quality of life measure in people with dementia and their carers: Evidence and key issues. Value in Health 2011;14(2):390-399.
[16] Reed C, Barrett A, Lebrec J et al. How useful is the EQ-5D in assessing the impact of caring for people with Alzheimer’s disease? Health Qual Life Outcomes 2017;15(1):16.
[17] Hessman 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):545-61.
[18] Orgeta V, Edwards RT, Hounsome B et al. The use of the EQ-5D as a measure of health-related quality of life in people with dementia and their carers. Qual Life Res 2015;24(2):315-24.
[19] Castro-Monteiro E, Forjaz MJ, Ayala A et al. Change and predictors of quality of life in institutionalized older adults with dementia. Qual Life Res 2014;2399):2595-601.
[20] Baquero M, Peset V, Burguera JA et al. Quality of life in Alzheimer’s disease/ Rev Neurol 2009;49(7):337-42.
[21] Karlawish JH, Zbrozek A, Kinosian B et al. Caregivers’ assessments of preference-based quality of life in Alzheimer’s disease. Alzheimers Dement 2008;4(3):203-11.
[22] Lopez-Bastida J, Serrano-Aguilar P, Perestelo-Perez L, Oliva-Moreno J. Social-economic costs and quality of life of Alzheimer disease in the Canary Islands, Spain. Neurology 2006;67(12):2186-91.
[23] Vogel A, Mortensen EL, Hasselbach SG et al. Patient versus informant reported quality of life in the earliest phases of Alzheimer’s disease. Int J Geriatr Psychiatry 2006;21(12):1132-8.
[24] Badia Llach X, Lara Surinach N, Roset Gamisans M. Quality of life, time commitment and burden perceived by the principal informal caregiver of Alzheimer’s patients. Aten Pharma 2004;34(4):170-7.
[25] Bachner YG, O’Rourke N. Reliability generalization of responses by care providers to the Zarit Burden Interview. Aging Ment Health 2007;11(6):678-85.
[26] 26. Ankri J, Andrieu S, Beaufils B et al. Beyond the global score of the Zarit Burden Interview: useful dimensions for clinicians. Int J Geriatr Psychiatry 2005;20(3):254-60.
[27] Hager K, Henneges C, Schneider E et al. Alzheimer dementia: course and burden on caregivers: Data over 18 months from German participants of the GERAS study. Nervenarzt 2017. doi: 10.1007/s00115-017-0371-6.
[28] Jones RW, Lebrec J, Kahle-Wrobleski K et al. Disease progression in mild cognitive dementia due to Alzheimer Disease in an 18-month observational study (GERAS): the impact on costs and caregiver outcomes. Dement Geriatr Cogn Dis Extra 2017;7(1):87-100.
[29] Dawood S. Caregiver burden, quality of life and vulnerability towards psychopathology in caregivers of patients with dementia/Alzheimer’s disease. J Coll Physicians Surg Pak 2016;26(11):892-95.
[30] Kazhungil F, Velayudhan R, Kumar M, Thazhe Mangool R. A comparative study of caregiver burden in late-onset depression and Alzheimer’s disease. Psychogeriatrics 2016;16(3):209-15.
[31] Matsushita M, Pai MC, Jhou CY et al. Cross-cultural study of caregiver burden for Alzheimer’s disease in Japan and Taiwan: result from Dementia Research in Kumamoto and Tainan (DeReKaT). Int Psychogeriatr 2016;28(7):1125-32.
[32] 32. Sousa MF, Santos RL, Turro-Garriga O et al. Factors associated with caregiver burden: comparative study between Brazilian and Spanish caregivers of patients with Alzheimer’s Disease (AD). Int Psychogeriatr 2016;28(8):1363-74.
[33] Mougias AA, Politis A, Mougias MA et al. The burden of caring for patients with dementia and its predictors. Psychiatriki 2015;26(1):28-37.
[34] Vellas B, Hausner L, Frolich L et al. Progression of Alzheimer disease in Europe: data from the European ICTUS study. Curr Alzheimer Res 2012;9(8):902-12.
[35] Nogueira MM, Neto JP, Sousa MF et al. Spouse-caregivers’ quality of life in Alzheimer’s disease. Int Psychogeriatr 2015;27(5):837-45.
[36] Dauphinot V, Delphin-Combe F, Mouchoux C et al. Risk factors of caregiver burden among patients with Alzheimer’s disease or related disorders: a cross-sectional study. J Alzheimers Dis 2015;44(3):907-16.
[37] Conde-Sala JL, Turro-Garriga O, Calvo-Perxas L et al. Three-year trajectories of caregiver burden in Alzheimer’s disease. J Alzheimers Dis 2014;42(2):623-33.
[38] Kamiya M, Sakurai T, Ogama N et al. Factors associated with increased caregivers’ burden in several cognitive stages of Alzheimer’s disease. Geriatr Gerontol Int 2014;14(Suppl.2):45-55.
[39] Miller LA, Mioshi E, Savage S et al. Identifying cognitive and demographic variables that contribute to carer burden in dementia. Dement Geriatr Cogn Disord 2013;36(1-2):43-9.
[40] Hashimoto M, Yatabe Y, Kaneda K et al. Impact of donepezil hydrochloride on the care burden of family caregivers of patients with Alzheimer’s disease. Psychogeriatrics 2009;9(4):196-203.
[41] Cummings JL. The Neuropsychiatric Inventory: assessing psychopathology in dementia patients. Neurology 1997;48(Suppl.6):S10-S16.
[42] Connor DJ, Sabbagh MN, Cummings JL. Comment on administration and scoring of the Neuropsychiatric Inventory (NPI) in clinical trials. Alzheimers Dement 2008;4(6):390-394.
[43] Tormalehto S, Martikainen J, Bell JS et al. Use of psychotropic medications in relation to neuropsychiatric symptoms, cognition and functional performance in Alzheimer’s disease over a three-year period: Kuopio ALSOVA study. Int Psychogeriatr 2017:1-11.
[44] Ng KP, Pascoal TA, Mathotaarachchi S et al. Neuropsychiatric symptoms predict hypometabolism in preclinical Alzheimer disease. Neurology 2017;88(19):1814-1821.
[45] Hyde AJ, May BH, Xue CC, Zhang AL. Variation in placebo effect size in clinical trials of oral interventions for management of the behavioral and psychological symptoms of dementia (BPSD): A systematic review and metaanalysis. Am J Geriatr Psychiatry 2017. pii: S1064-7481(17)30242-7.
[46] 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 2017. doi:10.1002/gps.4666.
[47] Li M, Huang H, Jiang G et al. Change patterns, influencing factors and predictors of quality of life in patients with Alzheimer’s disease. Zhonghua Yi Xue Za Zhi 2015;95(5):1131-4.
[48] Conde-Sala JL, Turro-Garriga O, Pinan-Hernandez S et al. Effects of anosognosia and neuropsychiatric symptoms on the quality of life of patients with Alzheimer’s disease: A 24-month follow-up study. Int J Geriatr Psychiatry 2016;31(2):109-19.
[49] American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (DSM-IV-TR) Washington, DC, USA: American Psychiatric Association; 2000.
[50] Greenberg GA, Rosenheck RA. Using the GAF as a national mental health outcome measure in the Department of Veterans Affairs. Psychiatr Serv 2005;56(4):420-6.
Published
2017-08-18
How to Cite
VASILIU, O. (2017). Improving Quality of Life in Caregivers of Alzheimer Dementia Patients- A Stepwise Approach. LUMEN Proceedings, 1, 943-958. https://doi.org/10.18662/lumproc.rsacvp2017.86
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