Objective: While the size and amount of the population aged 65 and older continues to rise, the number of persons with dementia (PwD) in industrialized countries will increase every year. Currently, an estimated 5.4 million Americans and 1.6 million Germans are affected by dementia in 2016. Informal caregivers such as adult children and spouses provide the largest proportion of care for PwD [Alzheimer’s Disease International, 2015]. Specifically, informal caregivers spend an average of 82.3 hours per month providing informal care to the PwD including both activities of daily living (ADLs) and instrumental activities of daily living (IADLs) [Michalowsky et al., 2017]. Thus, informal caregivers annually save the German healthcare system $28.5 billion and the American government $221.3 billion. However, previous studies indicate that caring for PwD requires a substantial amount of time and energetic resources and thus, may increase the stress and health-impairments of caregivers themselves over time. Previous research revealed that providing care to a PwD is related to high levels of physical, psychological, emotional, and social burden that may cause health impairments and dissatisfaction in the long term [for reviews, see Etters et al., 2008; van der Lee et al., 2014]. Specifically, caregiver burden has been shown to increase the risk of mood disorders, cognitive decline, cardiovascular disease, hypertension, kidney disease, obesity, use of psychotropic drugs and analgesics, depression, as well as. Furthermore, caregiver burden and associated health impairments are associated with earlier institutionalization of the PwD as well as decline in caregivers’ own health [Gaugler et al., 2009].
Accordingly, to maintain the important role informal caregivers play for both PWD and national health care systems, concepts for optimal support and provision for informal caregivers must be investigated. In this context, care management has proven to be an efficient intervention to provide long-term care for PwD and their caregivers by offering the support necessary to cover some of the needs of PwD and their caregivers . To provide an optimal support for informal dementia caregivers, we conducted a cluster-randomized controlled trial of a comprehensive Dementia Care Management (DCM) for persons with dementia (PWD) and their informal caregivers in a primary care setting.
Methods: The analyses are based on longitudinal data of the general practitioner-based, cluster-randomized DCM intervention trial DelpHi-MV (Dementia: life- and person-centered help) with baseline and 12-month follow-up assessment as well as two arms (intervention group versus care as usual). A sample of n = 317 community dwelling PWD screened positive for dementia (DemTect < 9) and their caregivers provided written informed consent to participate.
Results: Intervention caregivers reported significant improvements in caregiver burden, especially in caregivers’ subjective burden due to behavioral change (b= 1.02, SE = .53, p < .05, d = .24) and caregivers’ subjective burden due to perceived conflicts between needs and responsibilities to care (b= .63, SE = .39, p < .05, d = .09). Post-hoc subgroup analyses revealed that especially caregivers living together with PWD benefit from DCM compared to caregivers not living together with PWD
Conclusion: DCM provided by specifically trained nurses at patients’ domesticity using an IMS resulted in significant improvement in caregivers’ burden. These improvements were achieved by reducing caregivers’ subjective burden due to behavioral change and perceived conflicts between needs and responsibilities to care.
Alzheimer’s Disease International (2015) World Alzheimer Report 2015. Alzheimer’s Disease International (ADI): London
Michalowsky B, Fleßa S, Dreier A, Eichler T, Hertel J, König H , Rau H, Richter S, Thyrian J, Wucherer D, Zwingmann I, Hoffmann W. (2017) Healthcare utilization and total cost from payer and societal perspective in primary care patients with dementia – Baseline results of the DelpHi-trial. European Journal of Health Economics.
Etters, LD, Goodall, D, Harrison BE (2008) Caregiver burden among dementia patient caregivers: a review of the literature. J Am Acad. Nurse Pract 20(8): 423-428.
Gaugler JE, Yu F, Krichbaum K, Wymann JF (2009) Predictors of nursing home admission for persons with dementia. Med Care 47(2):191-198.
van der Lee J, Bakker TJEM, Duivenvoorden HJ, & Droes RM (2014) Multivariate models of subjective caregiver burden in dementia: a systematic review. Ageing Res Rev 15:76-93.