Caregivers of patients with frontotemporal lobar degeneration: a review of burden, problems, needs, and interventions
Open accessAbstract
BACKGROUND: Frontotemporal lobar degeneration (FTLD) is a relatively rare disease compared to Alzheimer' disease (AD), but nevertheless causes higher burden and stress to caregivers. Only little is known about the problems and needs of the caregivers of patients with FTLD. Such information is crucial for the development of caregiver support interventions. The aim of the current study is to systematically review publications on (1) burden, problems, and needs of FTLD caregivers, and (2) the feasibility and efficacy of caregiver interventions in FTLD. METHODS: A systematic review was conducted. Medical, psychological, and social sciences databases were searched for publications on burden, problems, needs of FTLD caregivers, and support interventions. RESULTS: Very little published data are available on burden, problems, and needs of FTLD caregivers. Burden among FTLD caregivers is higher than among AD caregivers and correlated with neuropsychiatric symptoms. Specific problems include delayed diagnosis, young age of patients, behavioral disturbances, lack of information and suitable care facilities, caregivers' depression, social isolation, and neglect of personal needs. Hardly any literature is available on the actual needs of FTLD caregivers. Regarding interventions for caregivers, no randomized controlled trials exist. Eight publications could be identified that provide narrative reports on structured caregiver support groups or respite care in combination with caregiver support intervention or advanced practice nursing. CONCLUSION: More research and funding are needed to elucidate the complex construct of burden of FTLD caregivers to identify and quantify their problems and needs in order to develop helpful interventions and services.
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Frontotemporal dementia can lead to greater carer burden and depression than Alzheimer's disease.
“It has been found that frontotemporal dementia can lead to greater carer burden and depression than Alzheimer's disease (Mioshi et al. , 2009; Nunnemann et al. , 2012)”
From Which interventions work for dementia family carers?: an updated systematic review of randomized controlled trials of carer interventions. (2018) · cites this paper as Nunnemann et al., 2012
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Kishita, N., Hammond, L., Dietrich, C. M., Mioshi, E., Haapala, I., Biggs, S., & Kurrle, S. (2018) · International Psychogeriatrics · doi:10.1017/s1041610218000947 · Cited by 119 · see citing works
“It has been found that frontotemporal dementia can lead to greater carer burden and depression than Alzheimer’s disease (Mioshi et al., 2009; Nunnemann et al., 2012), and lack of support is more concerning for these carers especially when behavioral symptoms are severe (Gorno-Tempini et al.”
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- Authors
- Nunnemann, S., Kurz, A., Leucht, S., & Diehl-Schmid, J.
- Affiliations
- TUM Klinikum (DE)
- Corresponding author
- Nunnemann, Sabine
- Venue
- International Psychogeriatrics
- Publisher
- Elsevier BV
- Published
- 2012-09
- Volume
- 24
- Issue
- 9
- Pages
- 1368-1386
- ISSN
- 1041-6102 (ISSN-L)
- OpenAlex
- W2143173834
- Cited by
- 75
- References
- 45
- Citations by year
- 2025: 5 · 2024: 1 · 2023: 1 · 2022: 7 · 2021: 8 · 2020: 5 · 2019: 5 · 2018: 8 · 2017: 4 · 2016: 4 · 2015: 11 · 2014: 7 · 2013: 9
- FWCI
- 1.17
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- International Psychogeriatrics (publishedVersion, cc-by-nc-nd)
- PubMed (publishedVersion)
- mediaTUM (Technical University of Munich) (submittedVersion)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Social Sciences › Psychology › Clinical Psychology › Family Caregiving in Mental Illness
- Keywords
- frontotemporal lobar degeneration, caregiver burden, caregiver needs, caregiver support interventions, caregiver depression, social isolation, neuropsychiatric symptoms, behavioral problems, delayed diagnosis, respite care, caregiver support groups, advanced practice nursing, care facilities
- MeSH terms
- Health Services Needs and Demand, Humans, Caregivers, Cost of Illness, Frontotemporal Dementia
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