Abstract
There are several barriers to accessing services for persons with frontotemporal dementia (FTD), and few studies have examined service needs and satisfaction with services for family caregivers of persons with FTD. Persons with FTD and their families have reported consistent difficulties in their attempts to access care and support. These are: (1) difficulty obtaining a diagnosis; (2) financial concerns due to loss of employment, job-related income; (3) problems accessing social security disability insurance; and (4) lack of adequate community-based and long-term care services and resources. Successful care practices such as use of an interdisciplinary team and helpful care models such as person-centered care and the antecedent–behavior–consequence method are described. Further investigation and research are needed to understand best care strategies for persons with FTD.
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References
Cardarelli R, Kertesz A, Knebl JA (2010) Frontotemporal dementia: a review for primary care physicians. Am Fam Physician 82(11):1372–1377
Cotter VT (2006) Alzheimer’s disease: issues and challenges in primary care. Nurs Clin North Am 41:83–93, vi
de Vugt ME, Nicolson NA, Aalten P, Lousbert R, Jolle J, Verhey FRJ (2005) Behavioral problems in dementia patients and salivary cortisol patterns in caregivers. J Neuropsychiatry Clin Neurosci 17(2):201–207
de Vugt ME, Riedijk SR, Aalten P, Tibben A, van Swieten JC, Verhey FR (2006) Impact of behavioural problems on spousal caregivers: a comparison between Alzheimer’s disease and frontotemporal dementia. Dement Geriatr Cogn Disord 22:25–41
Donaldson C, Tarrier N, Burns A (1998) Determinants of carer stress in Alzheimer’s disease. Int J Geriatr Psychiatry 13:248–256
Etters L, 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
Gregory CA, Hodges JR (1996) Clinical features of frontal lobe dementia in comparison to Alzheimer’s disease. J Neural Transm Suppl 47:103–123
Grinberg A, Lagunoff J, Phillips D, Stern B, Goodman M, Chow T (2007) Multidisciplinary design and implementation of a day program specialized for the frontotemporal dementias. Am J Alzheimers Dis Other Demen 22(6):499–506
Kitwood T (1990) The dialectics of dementia: with particular reference to Alzheimer’s disease. Ageing Soc 10:177–96
Kitwood T (1998) Dementia reconsidered: the person comes first. Open University Press, Buckingham
Mendez MF, Perryman KM (2002) Neuropsychiatric features of frontotemporal dementia: evaluation of consensus criteria and review. J Neuropsychiatry Clin Neurosci 14(4):424–429
Mendez MF, Shapira JS, McMurtray A, Licht E, Miller BL (2007) Accuracy of the clinical evaluation for frontotemporal dementia. Arch Neurol 64(6):830–835
Merrilees J (2007) A model for management of behavioral symptoms in frontotemporal lobar degeneration. Alzheimer Dis Assoc Disord 21(4):S64–S69
Mittelman MS, Haley WE, Clay OJ, Roth DL (2006) Improving caregiver well-being delays nursing home placement of patients with Alzheimer disease. Neurology 67:1592–1599
National Institute on Aging (2010) Frontotemporal disorders: information for patients, families, and caregivers (NIH Publication No. 10–6361). U.S. Government Printing Office, Washington, DC. Retrieved from http://www.nia.nih.gov/Alzheimers/Publications/FTLD/
Passant U, Elfgren C, Englund E, Gustafson L (2005) Psychiatric symptoms and their psychosocial consequences in frontotemporal dementia. Alzheimer Dis Assoc Disord 19(suppl 1):515–518
Riedijk SR, De Vugt ME, Duivenvoorden HJ, Niermeijer MF, van Swieten JC, Verhey FR et al (2006) Caregiver burden, health-related quality of life and coping in dementia caregivers: a comparison of frontotemporal dementia and Alzheimer’s disease. Dement Geriatr Cogn Disord 22:405–412
Rosness TA, Haugen PK, Engedal K (2008) Support to family carers of patients with frontotemporal dementia. Aging Ment Health 12(4):462–466
Shaji KS, George RK, Prince MJ, Jacob KS (2009) Behavioral symptoms and caregiver burden in dementia. Indian J Psychiatry 51(1):45–49
Social Security Administration (2010) Compassionate allowances. Retrieved from www.socialsecurity.gov/compassionateallowances. Accessed 15 May 2011
Stansell J (2009) Person-centered care In: FTD/PPA caregiver and professional education conference booklet. Cognitive Neurology and Alzheimer’s Disease Center, Northwestern University Feinberg School of Medicine, Chicago, p. 37)
Sussman T, Regehr C (2009) The influence of community-based services on the burden of spouses caring for their partners with dementia. Health Soc Work 34(1):29–39
Weintraub S, Morhardt D (2005) Treatment, education and resources for non-Alzheimer dementia: one size does not fit all. Alzheimer Care Quarterly 6(3):201–215
Williams B, Dulio A, Claypool H, Perry MJ, Cooper B (2004) Waiting for Medicare: experience of uninsured people with disabilities in the 2-year waiting period for Medicare. Commonwealth Fund, New York
Acknowledgements
This study was supported in part by grant AG13854 (Alzheimer’s Disease Center) from the National Institute on Aging to Northwestern University. Thanks to Dr. Sandra Weintraub and Jaimie Robinson, MSW, LCSW for their helpful comments on this manuscript.
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Morhardt, D. Accessing Community-Based and Long-Term Care Services: Challenges Facing Persons with Frontotemporal Dementia and Their Families. J Mol Neurosci 45, 737–741 (2011). https://doi.org/10.1007/s12031-011-9612-5
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DOI: https://doi.org/10.1007/s12031-011-9612-5