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Caregivers of patients with frontotemporal lobar degeneration: a review of burden, problems, needs, and interventions

Published online by Cambridge University Press:  16 April 2012

Sabine Nunnemann ,
Alexander Kurz ,
Stefan Leucht  and
Janine Diehl-Schmid
Sabine Nunnemann*
Affiliation:
Department of Psychiatry, Klinikum rechts der Isar, Technische Universität München, Munich, Germany
Alexander Kurz
Affiliation:
Department of Psychiatry, Klinikum rechts der Isar, Technische Universität München, Munich, Germany
Stefan Leucht
Affiliation:
Department of Psychiatry, Klinikum rechts der Isar, Technische Universität München, Munich, Germany
Janine Diehl-Schmid
Affiliation:
Department of Psychiatry, Klinikum rechts der Isar, Technische Universität München, Munich, Germany
*
Correspondence should be addressed to: Dr. Sabine Nunnemann, Department of Psychiatry, Technische Universität München, Ismaninger Str. 22, 81675 München, Germany. Phone: +49-89-4140-4275; Fax: +49-89-4140-4923. Email: [email protected].
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Abstract

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.

Keywords

frontotemporal dementiacarerFTDFTLDsystematic review
Type
Review Article
Information
International Psychogeriatrics , Volume 24 , Issue 9 , September 2012 , pp. 1368 - 1386
Copyright
Copyright © International Psychogeriatric Association 2012

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References

Ascher, E. A., Sturm, V. E., Seider, B. H., Holley, S. R., Miller, B. L. and Levenson, R. W. (2010). Relationship satisfaction and emotional language in frontotemporal dementia and Alzheimer disease patients and spousal caregivers. Alzheimer Disease and Associated Disorders, 24, 49–55. doi:10.1097/WAD.0b013e3181bd66a3.CrossRefGoogle ScholarPubMed
Banks, S., Rogalski, E., Medina, J., Skoglund, A. and Morhardt, D. (2006). Organizing a series of education and support conferences for caregivers of individuals with frontotemporal dementia and primary progressive aphasia. Alzheimers Care Quarterly, 7, 243–250.Google ScholarPubMed
Borroni, B. et al. (2010). Is frontotemporal lobar degeneration a rare disorder? Evidence from a preliminary study in Brescia county, Italy. Journal of Alzheimer's Disease, 19, 111–116. doi:10.3233/JAD-2010-1208.CrossRefGoogle ScholarPubMed
Boutoleau-Bretonniere, C., Vercelletto, M., Volteau, C., Renou, P. and Lamy, E. (2008). Zarit Burden Inventory and activities of daily living in the behavioral variant of frontotemporal dementia. Dementia and Geriatric Cognitive Disorders, 25, 272–277. doi:10.1159/000117394.CrossRefGoogle ScholarPubMed
Bristow, M., Cook, R., Erzinclioglu, S. and Hodges, J. (2008). Stress, distress and mucosal immunity in carers of a partner with frontotemporal dementia. Aging & Mental Health, 12, 595–604. doi:10.1080/13607860802343076.CrossRefGoogle Scholar
Chemali, Z., Withall, A. and Daffner, K. R. (2010). The plight of caring for young patients with frontotemporal dementia. American Journal of Alzheimer's Disease and Other Dementias, 25, 109–115. doi:10.1177/1533317509352335.CrossRefGoogle ScholarPubMed
Connor, K. I. et al. (2008). Determining care management activities associated with mastery and relationship strain for dementia caregivers. Journal of the American Geriatrics Society, 56, 891–897. doi:10.1111/j.1532-5415.2008.01643.x.CrossRefGoogle ScholarPubMed
Davies, M. and Larner, A. J. (2010). Frontotemporal dementias: development of an integrated care pathway through an experiential survey of patients and carers. International Journal of Care Pathways, 14, 65–69.CrossRefGoogle Scholar
de Vugt, M. E., Riedijk, S. R., Aalten, P., Tibben, A., van Swieten, J. C. and Verhey, F. R. (2006). Impact of behavioural problems on spousal caregivers: a comparison between Alzheimer's disease and frontotemporal dementia. Dementia and Geriatric Cognitive Disorders, 22, 35–41. doi:10.1159/000093102.CrossRefGoogle ScholarPubMed
Diehl, J., Mayer, T., Förstl, H. and Kurz, A. (2003). A support group for caregivers of patients with frontotemporal dementia. Dementia, 2, 151–161. doi:10.1177/1471301203002002002.CrossRefGoogle Scholar
Diehl, J., Förstl, H., Jansen, S. and Kurz, A. (2004). Frontotemporal dementia: specific problems for caregivers (in German). Zeitschrift fur Gerontologie und Geriatrie, 37, 301–306. doi:10.1007/s00391-004-0202-9.Google Scholar
Diehl-Schmid, J., Last, D., Schuster, T., Förstl, H., Schneider-Schelte, H. and Kurz, A. (2011). Health care utilization in frontotemporal lobar degeneration. Alzheimer Disease and Associated Disorders, June, epub ahead of print. doi: 10.1097/WAD.0b013e3182263edc.CrossRefGoogle Scholar
Eisdorfer, C. et al. (2003). The effect of a family therapy and technology-based intervention on caregiver depression. Gerontologist, 43, 521–531.CrossRefGoogle ScholarPubMed
Etters, L., Goodall, D. and Harrison, B. E. (2008). Caregiver burden among dementia patient caregivers: a review of the literature. Journal of the American Academy of Nurse Practitioners, 20, 423–428. doi:10.1111/j.1745-7599.2008.00342.x.CrossRefGoogle ScholarPubMed
Grinberg, A. and Phillips, D. (2009). The impact of a community day program on the lives of patients with frontotemporal dementia and their caregivers. The Canadian Review of Alzheimer's Disease and Other Dementias, 12 (2), 17–22.Google Scholar
Grinberg, A., Lagunoff, J., Phillips, D., Stern, B., Goodman, M. and Chow, T. (2007). Multidisciplinary design and implementation of a day program specialized for the frontotemporal dementias. American Journal of Alzheimer's Disease and Other Dementias, 22, 499–506. doi:10.1177/1533317507308780.CrossRefGoogle Scholar
Ibach, B., Koch, H., Koller, M., Hajak, G. and Putzhammer, A. (2004). The situation of caregiver counselling in patients with frontotemporal lobar dementia in old psychiatry (in German). Psychiatrische Praxis, 31, S120–S122.CrossRefGoogle Scholar
Ikeda, M. et al. (1996). The efficacy of short-term hospitalizations in family care for patients with Pick's disease. Seishin Shinkeigaku Zasshi, 98, 822–829.Google ScholarPubMed
Johnson, K. J. et al. (2005). Frontotemporal lobar degeneration: demographic characteristics of 353 patients. Archives of Neurology, 62, 925–930.CrossRefGoogle ScholarPubMed
Kaiser, S. and Panegyres, P. K. (2006). The psychosocial impact of young onset dementia on spouses. American Journal of Alzheimer's Disease and Other Dementias, 21, 398–402. doi:10.1177/1533317506293259.CrossRefGoogle ScholarPubMed
Knutson, K. M., Zamboni, G., Tierney, M. C. and Grafman, J. (2008). Neural correlates of caregiver burden in cortical basal syndrome and frontotemporal dementia. Dementia and Geriatric Cognitive Disorders, 26, 467–474. doi:10.1159/000167268.CrossRefGoogle ScholarPubMed
Kumamoto, K., Arai, Y., Hashimoto, N., Ikeda, M., Mizuno, Y. and Washio, M. (2004). Problems family caregivers encounter in home care of patients with frontotemporal lobar degeneration. Psychogeriatrics, 4, 33–39.CrossRefGoogle Scholar
Luscombe, G., Brodaty, H. and Freeth, S. (1998). Younger people with dementia: diagnostic issues, effects on carers and use of services. International Journal of Geriatric Psychiatry, 13, 323–330.3.0.CO;2-O>CrossRefGoogle ScholarPubMed
Marziali, E. and Climans, R. (2009). New technology to connect frontotemporal dementia spousal caregivers online. The Canadian Review of Alzheimer's Disease and Other Dementias, 12 (2), 23–26.Google Scholar
Mercy, L., Hodges, J. R., Dawson, K., Barker, R. A. and Brayne, C. (2008). Incidence of early-onset dementias in Cambridgeshire, United Kingdom. Neurology, 71, 1496–1499.CrossRefGoogle ScholarPubMed
Merrilees, J. and Ketelle, R. (2010). Advanced practice nursing: meeting the caregiving challenges for families of persons with frontotemporal dementia. Clinical Nurse Specialist, 24, 245–251.CrossRefGoogle ScholarPubMed
Merrilees, J., Klapper, J., Murphy, J., Lomen-Hoerth, C. and Miller, B. L. (2010). Cognitive and behavioral challenges in caring for patients with frontotemporal dementia and amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis, 11, 298–302. doi:10.3109/17482961003605788.CrossRefGoogle ScholarPubMed
Mioshi, E., Bristow, M., Cook, R. and Hodges, J. R. (2009). Factors underlying caregiver stress in frontotemporal dementia and Alzheimer's disease. Dementia and Geriatric Cognitive Disorders, 27, 76–81. doi:10.1159/000193626.CrossRefGoogle ScholarPubMed
Mourik, J. C., Rosso, S. M., Niermeijer, M. F., Duivenvoorden, H. J., van Swieten, J. C. and Tibben, A. (2004). Frontotemporal dementia: behavioral symptoms and caregiver distress. Dementia and Geriatric Cognitive Disorders, 18, 299–306. doi:10.1159/000080123.CrossRefGoogle ScholarPubMed
Nicolaou, P. L., Egan, S. J., Gasson, N. and Kane, R. T. (2010). Identifying needs, burden, and distress of carers of people with frontotemporal dementia compared to Alzheimer's disease. Dementia, 9, 215–235. doi:10.1177/1471301209354024.CrossRefGoogle Scholar
Passant, U., Elfgren, C., Englund, E. and Gustafson, L. (2005). Psychiatric symptoms and their psychosocial consequences in frontotemporal dementia. Alzheimer Disease and Associated Disorders, 19, S15–S18.CrossRefGoogle ScholarPubMed
Peeters, J. M., van Beek, A. P., Meerveld, J. H., Spreeuwenberg, P. M. and Francke, A. L. (2010). Informal caregivers of persons with dementia, their use of and needs for specific professional support: a survey of the National Dementia Programme. BMC Nursing, 9, 9. doi:10.1186/1472-6955-9-9.CrossRefGoogle ScholarPubMed
Pinquart, M. and Sörensen, S. (2003). Associations of stressors and uplifts of caregiving with caregiver burden and depressive mood: a meta-analysis. Journal of Gerontology: Psychological Sciences, 58B, P112–P128.CrossRefGoogle Scholar
Pinquart, M. and Sörensen, S. (2006). Helping caregivers of persons with dementia: which interventions work and how large are their effects? International Psychogeriatrics, 18, 577–595. doi:10.1017/S1041610206003462.CrossRefGoogle ScholarPubMed
Rabinovici, G. D. and Miller, B. L. (2010). Frontotemporal lobar degeneration: epidemiology, pathophysiology, diagnosis and management. CNS Drugs, 24, 375–398.CrossRefGoogle ScholarPubMed
Rascovsky, K. et al. (2011). Sensitivity of revised diagnostic criteria for the behavioral variant of frontotemporal dementia. Brain, 134, 2456–2477.CrossRefGoogle Scholar
Ratnavalli, E., Brayne, C., Dawson, K. and Hodges, J. R. (2002). The prevalence of frontotemporal dementia. Neurology, 58, 1615–1621.CrossRefGoogle ScholarPubMed
Reah, B., Julien, C., Stopford, C. and Thompson, J. (2008). Developing a specialised support group for carers of people with frontotemporal dementia and semantic dementia. Dementia and Geriatric Cognitive Disorders, 26, 88, P152.Google Scholar
Riedijk, S. R. et al. (2006). Caregiver burden, health-related quality of life and coping in dementia caregivers: a comparison of frontotemporal dementia and Alzheimer's disease. Dementia and Geriatric Cognitive Disorders, 22, 405–412. doi:10.1159/000095750.CrossRefGoogle ScholarPubMed
Riedijk, S., Duivenvoorden, H., Rosso, S., Van Swieten, J., Niermeijer, M. and Tibben, A. (2008). Frontotemporal dementia: change of familial caregiver burden and partner relation in a Dutch cohort of 63 patients. Dementia and Geriatric Cognitive Disorders, 26, 398–406. doi:10.1159/000164276.CrossRefGoogle Scholar
Riedijk, S., Duivenvoorden, H., van Swieten, J., Niermeijer, M. and Tibben, A. (2009a). Sense of competence in a Dutch sample of informal caregivers of frontotemporal dementia patients. Dementia and Geriatric Cognitive Disorders, 27, 337–343. doi:10.1159/000207447.CrossRefGoogle Scholar
Riedijk, S. R. et al. (2009b). Frontotemporal dementia (FTD) patients living at home and their spousal caregivers compared with institutionalized FTD patients and their spousal caregivers: which characteristics are associated with in-home care? Dementia, 8, 61–77. doi:10.1177/1471301208099045.CrossRefGoogle Scholar
Romero, B. and Wenz, M. (2002). Konzept und Wirksamkeit eines Behandlungsprogrammes für Demenzkranke und deren Angehörige. Zeitschrift für Gerontologie und Geriatrie, 35, 118–128.CrossRefGoogle Scholar
Rosness, T. A., Haugen, P. K. and Engedal, K. (2008). Support to family carers of patients with frontotemporal dementia. Aging & Mental Health, 12, 462–466. doi:10.1080/13607860802224334.CrossRefGoogle ScholarPubMed
Rosso, S. M. et al. (2003). Frontotemporal dementia in The Netherlands: patient characteristics and prevalence estimates from a population-based study. Brain, 126, 2016–2022.CrossRefGoogle ScholarPubMed
Selwood, A., Johnston, K., Katona, C., Lyketsos, C. and Livingston, G. (2007). Systematic review of the effect of psychological interventions on family caregivers of people with dementia. Journal of Affective Disorders, 101, 75–89. doi:10.1016/j.jad.2006.10.025.CrossRefGoogle ScholarPubMed
Walentas, C. D., Shineman, D. W., Horton, A. R., Boeve, B. F. and Fillit, H. M. (2011). An analysis of global research funding for the frontotemporal dementias: 1998–2008. Alzheimer's & Dementia, 7, 142–150. doi:10.1016/j.jalz.2010.11.010.CrossRefGoogle ScholarPubMed
Wancata, J. et al. (2005). The Carers' Needs Assessment for Dementia (CNA-D): development, validity and reliability. International Psychogeriatrics, 17, 393–406. doi:10.1017/s1041610205001699.CrossRefGoogle ScholarPubMed