Artikel
DESCRIBE – Impact on daily life (DL). Health care for people living with dementia and their families – analysis of social health and their association to clinical characteristics of the disease
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Autoren
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Jessica Monsees
- German Center for Neurodegenerative Diseases (DZNE), Greifswald, Germany
| Veröffentlicht: | 26. September 2017 |
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Gliederung
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Background: The DESCRIBE-DL-study is an add-on research project to the DZNE register-study of neuro-degenerative diseases (DESCRIBE). Its goal is to assess the personal situation of the partici-pants of the FTD-cohort and their caregivers under the aspect of social health. Frontotemporal dementia (FTD) is characterized by its early onset and, therefore, usually affects people at a young age. This has various consequences, including occupational disability resulting in fi-nancial losses or a reorientation of life planning. This can lead to conflicts within the family, a high emotional burden for caregivers [1] and a decrease in health-related quality of life [2]. Difficulties with the commu-nication of the diagnosis and a lack of available information are compounding factors leaving many families in uncertainty. Optimizing health care as well as the development of psychoso-cial interventions are of crucial significance, because existing services for FTD are often not specific enough and not suitable for every affected patient or they are not addressing the indi-vidual needs of the people affected [3], [4]. There is a general lack of data concerning social health associated with FTD. This dissertation will take a closer look at social health and its determinants.
Research questions:
- 1.
- What are the social and economic burdens for the people affected and their caregivers?
- 2.
- Which health care services are used by people with FTD and their caregivers?
- 3.
- Which psychosocial factors are involved with FTD and how do they influence the people suffering from FTD and their caregivers?
Method: Dimensions of social health will be assessed in a baseline-examination and up to three annual follow-up-examinations based on validated instruments. Socio-economic status, FIMA, BDI, EQ5-D and HrQoL will be used to assess the data concerning social health of people with FTD, while families will be inquired about their socio-economic status, caregiver burden and social needs additionally to answering the RUD and BDI.
Goal: The relation of the acquired information to status, progression and clinical parameters of dementia and especially FTD will be worked out to develop a specific psychosocial intervention for “good life with dementia” for people with dementia and their families.
References
- 1.
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- 2.
- Riedijk SR, De Vugt ME, Diuvenvoorden HJ, Niermeijer MF, Van Swieten JC, et al. Caregiver Burden, Health-Related Quality of Life and Coping in Dementia Care-givers: A Comparison of Frontotemporal Dementia and Alzheimer's Disease. Dementia and Geriatric Cognitive Disorders. 2006; 22: 405-412.
- 3.
- Beattie A, Daker-White G, Gilliard J, Means R. 'How can they tell?' A qualitative study of the views of younger people about their dementia and dementia care services. Health and Social Care in the Community. 2004;12 (4): 359-368.
- 4.
- Koehn SD, Kozak JF, Drance E. 'The Problem with Leonard': A critical constructionist view of need-driven dementia-compromised behaviours. Dementia. 2011; 11: 725-741.
