Background: In Germany, 70% of people with dementia (PWD) are cared for at home by a family caregiver (FC)[1]. As PWD’s need for care increases as the disease progresses, FCs are exposed to a heightened risk of strain and stress[2]. Support services can provide targeted relief for FCs in the caregiving situation3. For targeted support of people with disabilities to take place according to their needs, knowledge of how to assess such offers is essential.
Question: The aim of this study is to conduct a comparative analysis of the perceived importance of support services for informal caregivers (pA) versus professional dementia experts (pD).
Method: As part of the research project „Digital Dementia Registry Bavaria – digiDEM Bavaria,“ an online survey was conducted. The survey served as the basis for developing an needs assessment instrument. Data collection was anonymous. Participants were asked to provide information on their gender, background, years of experience in dementia care, and their postal code. Experts were then asked to rate 44 different support services on a scale of one (not important) to ten (important) based on their relevance to dementia care.
Results: 30 pA and 29 pD participated in the survey. The average length of experience with dementia was 12.69 years. 66% of the participants were female. Significant group differences were found for the services „Family support group/self-help group“ (M(pA)=5.97; M(pD)=7.83; p=0.013, r=0.665), „Outpatient care“ (M(pA)=7.7; M(pD)=9.03; p=0.016, r=0.651), „Services for daily living support (e.g., volunteer network, care service, neighborhood assistance)“ (M(pA)=7.27; M(pD)=8.69; p=0.022, r=0.614) and „Provision of Assistive Devices“ (M(pA)=9.0; M(pD)=7.97; p=0.043, r=-0.534).
Discussion: Support services can relieve caregivers [1]. Nevertheless, international studies show that utilization rates are often low despite sufficient supply [2], [3]. In this regard, low utilization rates can indicate a mismatch between the services offered and those needed by people with dementia (PwD) and their caregivers [5]. Furthermore, it was shown that caregivers rated the majority of support services as less important than care recipients did. Following a study by Brodaty et al., this could suggest that caregivers generally perceive their own need for support as lower [4].
Practical implications For health policy supply planning, it is important that the services offered meet the actual needs of people with severe disabilities (MmD) and their primary caregivers (pA). To achieve this, empirical data on the needs of MmD and their pA regarding support services are necessary. Only needs-oriented supply planning can increase utilization rates and specifically relieve primary caregivers within the scope of care.
Bibliography:
[1] Zwingmann I, Hoffmann W, Michalowsky B et al. Unmet care needs of informal caregivers of people with dementia. Der Nervenarzt 2018; 89: 495-499
[2] Graessel E, Behrndt EM. Strains and relief services for informal caregivers. In: Jacobs K, Kuhlmey A, Greß S, Klauber J, Schwinger A, eds. Pflege-Report 2016 Focus: Caregivers in Focus. Stuttgart: Schattauer; 2016:169-189
Karrer L, Dietzel N, Wolff F et al. Use of Outpatient Care Services by People with Dementia: Results of the Bavarian Dementia Survey (BayDem). Gesundheitswesen 2019, DOI: 10.1055/a-1071-7851
[4] Lethin C, Leino-Kilpi H, Roe B et al. Formal support for informal caregivers to older persons with dementia through the course of the disease: an exploratory, cross-sectional study. BMC Geriatr 2016; 16: 32
Phillipson L, Jones SC, Magee C. A review of the factors associated with the non-use of respite services by carers of people with dementia: implications for policy and practice. Health Soc Care Community 2014; 22: 1-12
Lecture presented at the 20th German Congress for Health Services Research on October 6, 2021
Nikolas Dietzel, Lara Kürten, Sebastian Meuer, Dorothee Klaas-Ickler, Markus Hladik, Christina Chmelirsch, Elmar Gräßel, Peter L. Kolominsky-Rabas
