The association between caregiver well-being and care provided to persons with Alzheimer’s disease and related disorders

BMC Research Notes, Jul 2016

Background Alzheimer’s disease and related disorders (ADRD) are some of the leading causes of morbidity in developed nations. Unpaid family caregivers are primarily responsible for providing the care and support needed by persons with ADRD. In the process of caring for their loved ones with ADRD, caregivers often have to deal with multiple challenges, including their own deteriorating well-being and overall quality-of-life (QoL). A recent systematic review showed that very little research has been undertaken to study the relationship between AD caregiver QoL and the level or quality of care that caregivers provide to their loved ones. In this study, we investigate the relationships between caregiver well-being and the care provided to persons with ADRD. Methods We used 12-month follow-up data from the Philadelphia site (n = 125) of the National Institutes of Health (NIH) multi-site study, Resources for Enhancing Alzheimer’s Caregiver Health (REACH I) to examine the relationship between caregiver well-being and the level or quality of care provided while adjusting for important covariates (e.g., age, income, and years since caregiving). Caregivers who participated in REACH I had to be at least 21 years of age and they had to be providing at least 4 h of care per day for 6 months or more to a live-in loved one with ADRD. Linear regression analysis was used to examine the relationships between well-being and the level or quality of care provided to persons with ADRD. Results Of the 255 caregivers who participated in the REACH I study, 125 (49.0 %) remained after 12 months of follow-up. Comparisons of participants at the 12-month follow-up and participants who were lost to follow-up showed that these two sets of participants were not statistically significantly different on any of the variables examined in this study. Linear regression analysis showed that there was no statistically significant association between caregiver well-being and level or quality of care provided. Conclusions Further research is required to investigate the factors associated with level and quality of care provided to persons with ADRD, and whether caregiver well-being (or QoL in general) is a contributor.

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The association between caregiver well-being and care provided to persons with Alzheimer’s disease and related disorders

Hazzan et al. BMC Res Notes The association between caregiver well-being and care provided to persons with Alzheimer's disease and related disorders Afeez Abiola Hazzan 0 2 Harry Shannon 2 Jenny Ploeg 1 Parminder Raina 2 Laura N. Gitlin 4 Mark Oremus 2 3 0 Department of Medicine, McMaster University , 1280 Main Street West, Hamilton, ON L8S 4K1 , Canada 1 School of Nursing, McMaster University , 1280 Main Street West, Hamilton, ON L8S 4K1 , Canada 2 Department of Clinical Epidemiology and Biostatistics, McMaster University , 1280 Main Street West, Hamilton, ON L8S 4K1 , Canada 3 School of Public Health and Health Sciences, University of Waterloo, 200 University Avenue West , Waterloo, ON N2L 3G1 , Canada 4 Department of Community-Public Health, Center for Innovative Care in Aging, Johns Hopkins School of Nursing , Baltimore, MD 21205 , USA Background: Alzheimer's disease and related disorders (ADRD) are some of the leading causes of morbidity in developed nations. Unpaid family caregivers are primarily responsible for providing the care and support needed by persons with ADRD. In the process of caring for their loved ones with ADRD, caregivers often have to deal with multiple challenges, including their own deteriorating well-being and overall quality-of-life (QoL). A recent systematic review showed that very little research has been undertaken to study the relationship between AD caregiver QoL and the level or quality of care that caregivers provide to their loved ones. In this study, we investigate the relationships between caregiver well-being and the care provided to persons with ADRD. Methods: We used 12-month follow-up data from the Philadelphia site (n = 125) of the National Institutes of Health (NIH) multi-site study, Resources for Enhancing Alzheimer's Caregiver Health (REACH I) to examine the relationship between caregiver well-being and the level or quality of care provided while adjusting for important covariates (e.g., age, income, and years since caregiving). Caregivers who participated in REACH I had to be at least 21 years of age and they had to be providing at least 4 h of care per day for 6 months or more to a live-in loved one with ADRD. Linear regression analysis was used to examine the relationships between well-being and the level or quality of care provided to persons with ADRD. Results: Of the 255 caregivers who participated in the REACH I study, 125 (49.0 %) remained after 12 months of follow-up. Comparisons of participants at the 12-month follow-up and participants who were lost to follow-up showed that these two sets of participants were not statistically significantly different on any of the variables examined in this study. Linear regression analysis showed that there was no statistically significant association between caregiver wellbeing and level or quality of care provided. Conclusions: Further research is required to investigate the factors associated with level and quality of care provided to persons with ADRD, and whether caregiver well-being (or QoL in general) is a contributor. Well-being; Quality-of-life; Quality of care; Level of care; Alzheimer's disease and related disorders; Dementia; Caregiving; Aging Background Alzheimer’s disease and related disorders (ADRD) are incurable conditions that reduce brain function over time. ADRD are some of the leading causes of morbidity in North America, especially among people aged 65 years or older [ 1 ]. More than 5.3 million Americans are currently living with ADRD [ 1, 2 ]. Further, one in eight older Americans currently has ADRD and up to 16 million Americans are projected to have the disease by 2050 [ 3, 4 ]. The situation in Canada is similar. Out of a population of approximately 36 million people, more than 750,000 Canadians are currently living with ADRD [ 5 ]. More than 40,000 Canadians develop these diseases annually and projections suggest that the total number of Canadians with ADRD could double to 1.4 million people by 2030 [ 5 ]. The impact of ADRD is global. A recent systematic review and meta-analysis estimated the age-standardized prevalence of ADRD in persons aged  ≥60 to be 5–7  % in most world regions [ 2 ]. The authors found the highest prevalence in Latin America (8.5  %) and the lowest in sub-Saharan Africa (2–4 %) [ 2 ]. The authors also estimated that about 40 million people worldwide are currently living with ADRD, with these numbers expected to double every 20 years [ 2 ]. The majority of persons diagnosed with ADRD receive their care in the community instead of in long-term care or other assisted living facilities [ 6 ]. Among communitydwelling persons with ADRD, 80 % of their care is delivered by family caregivers [ 3, 5 ], who bear the burden of this care without receiving financial compensation [ 5, 7, 8 ]. These caregivers are usually the spouses or children of the person with ADRD. As ADRD progresses, caregivers often have to manage increasing complexity of multipl (...truncated)


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Afeez Abiola Hazzan, Harry Shannon, Jenny Ploeg, Parminder Raina, Laura N. Gitlin, Mark Oremus. The association between caregiver well-being and care provided to persons with Alzheimer’s disease and related disorders, BMC Research Notes, 2016, pp. 344, Volume 9, Issue 1, DOI: 10.1186/s13104-016-2150-z