The literature on carers of people with Frontotemporal dementia (FTD) is negligible compared to the vast literature on carers of people with Alzheimer’s disease (AD), and little research has compared the two groups. Research has mainly focused on identifying the behavioural characteristics of people with FTD or AD. The impact of these behaviours on the psychological well-being of carers of people with FTD is relatively unexplored. This study investigated the needs, burden, and extent of depression and anxiety in carers of people with FTD (n = 30) compared to carers of people with AD (n = 30). Findings indicated that needs of carers of people with FTD were significantly higher than those of the carers of people with AD. The elevated needs were related to the younger onset of FTD, financial dissatisfaction, typical FTD characteristics, and access to appropriate services, information and support. Results also suggested that female carers were more likely to report a greater severity and impact of disruptive symptoms associated with FTD. No significant differences were found between the two groups on carers’ levels of burden, depression or anxiety. In order to address the needs of carers of people with FTD, we recommend specific educational and support programs, raising community awareness and understanding, and tailoring existing domiciliary services and activities for people with FTD.
Bathgate, D., Snowden, J.S., Varma, A., Blackshaw, A., & Neary, D. ( 2001). Behaviour in frontotemporal dementia, Alzheimer’s disease and vascular dementia. Acta Neurologica Scandinavica , 103, 367-378.
2.
Beattie, A.M., Daker-White, G., Gilliard, J., & Means, R. ( 2002). Younger people in dementia care: a review of service needs, service provision and models of good practice. Aging and Mental Health, 6(3), 205-212.
3.
Bedard, M., Molloy, D.W., Squire, L., & Dubois, S. ( 2001). The Zarit Burden Interview: A new short version and screening version. The Gerontologist, 41 (5), 652-658.
4.
Beeson, R.A. ( 2003). Loneliness and depression in spousal caregivers of those with Alzheimer’s disease vs non-caregiving spouses. Archives of Psychiatric Nursing, 17(3), 135-143.
5.
Beisecker, A.E., Chrisman, S.K., & Wright, L.J. ( 1997). Perceptions of family caregivers of person with Alzheimer’s disease: Communication with physicians. American Journal of Alzheimer’s Disease, 12 (2), 73-83.
6.
Bodnar, J.C., & Kiecolt-Glaser, J.K. (1994). Caregiver depression after bereavement: Chronic stress isn’t over when it’s over. Psychology and Aging, 9(3), 372-380.
7.
Bowd, A.D., & Loos, C.H. ( 1996). Needs, morale and coping strategies of caregivers for persons with Alzheimer’s disease in isolated communities in Canada . American Journal of Alzheimer’s Disease, 11(3), 32-39.
8.
Bozeat, S., Gregory, C.A., Lambon Ralph, M.A., & Hodges, J.R. ( 2000). Which neuropsychiatric and behavioural features distinguish frontal and temporal variants of frontotemporal dementia from Alzheimer’s disease?Journal of Neurology, Neurosurgery and Psychiatry , 69, 178-186.
9.
Brown, T.A., Korotitsch, W., Chorpita, B.F., & Barlow, D.H. ( 1997). Psychometric properties of the Depression Anxiety Stress Scale (DASS) in clinical samples. Behaviour Research and therapy , 35, 79-89.
10.
Coon, D.W., Thompson, L., Steffen, A., Sorocco, K., & Gallagher-Thompson, D. (2003). Anger and depression management: Psychoeducational skills training interventions for women caregivers of a relative with dementia. The Gerontologist, 43(5), 678-689.
11.
Cooper, C., Katona, C., Orrell, M., & Livingston, G. (2006). Coping strategies and anxiety in caregivers of people with Alzheimer’s disease: The LASER-AD study . Journal of Affective Disorders, 90, 15-20.
12.
Crawford, J.R., & Henry, J.D. ( 2003). The Depression Anxiety Stress Scale (DASS): Normative data and latent structure in a large non-clinical sample. British Journal of Clinical Psychology, 42, 111-131.
13.
Crespo, M., Lopez, J., & Zarit, S.H. ( 2005). Depression and anxiety in primary caregivers: a comparative study of caregivers of demented and nondemented older persons . International Journal of Geriatric Psychiatry, 20, 591-592.
14.
Danhauer, S.C., Beckett, L.A., McCann, J.J., Gilley, D.W., Bienias, J.L., & Evans, D.A. ( 2004). Do Behavioural Disturbances in Persons with Alzheimer’s Disease Predict Caregiver Depression Over Time? Psychology and Aging, 19(1), 198-202.
15.
De Vugt, M.E., Riedijk, S.R., Aalten, P., Tibben, A., van Swieten, J.C., & Verhey, F.R.J. (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.
16.
Diehl, J., Mayer, T., Forstl, H., & Kurz, A. ( 2003). A support group for caregivers of patients with frontotemporal dementia. Dementia: The International Journal of Social Research and Practice, 2(2), 151-161.
17.
Donaldson, C., Tarrier, N., & Burns, A. ( 1998). Determinants of Carer Stress in Alzheimer’s Disease . International Journal of Geriatric Psychiatry, 13, 248-256.
18.
Dura, J.A., Stukenberg, K.W., & Kiecolt-Glaser, J.K. (1991). Anxiety and depressive disorders in adult children caring for demented parents. Psychology and Aging, 6(3), 467-473.
19.
Farmer, J., & Grossman, M. ( 2005). Frontotemporal Dementia: An overview. Alzheimer’s Care Quarterly, 6(3), 225-232.
20.
Field, A. ( 1995). Discovering statistics using SPSS - and sex, drugs and rock ‘n’ roll (2nd ed.). London: SAGE.
21.
Gallicchio, L., Siddiqi, N., Langenberg, P., & Baumgarten, M. (2002). Gender differences in burden and depression among informal caregivers of demented elders in the community . International Journal of Geriatric Psychiatry , 17, 154-163.
22.
Gaugler, J.E., Newcomer, R., Kane, R.L., & Kane, R.A. ( 2005). The longitudinal effects of early behavioural problems in the dementia caregiving career. Psychology and Aging, 20(1), 100-116.
23.
Grant, I. ( 1999). Caregiving may be hazardous to your health. Psychosomatic Medicine, 61, 420-423.
24.
Hall, G.R. ( 2003). When traditional care falls short. Caring for people with atypical presentations of cortical dementia. Journal of Gerontological Nursing, 25(2), 22-32.
25.
Hooker, K., Bowman, S.R., Coehlo, D.P., & Lim, S.R. ( 2002). Behavioural Change in Persons with Dementia: Relationships with Mental and Physical Health of Caregivers. The Journals of Gerontology: Series B: Psychological sciences and social sciences, 57B (5), 453-463.
26.
Kaiser, S., & Panegyres, P.K. (2007). The psychological impact of young onset dementia on spouses. American Journal of Alzheimer’s disease and other dementias, 21, 398-402.
27.
Karlawish, J.H.T., Casarett, D., Klocinski, J., & Clark, C.M. ( 2001). The relationship between caregivers’ global ratings of Alzheimer’s disease patients’ quality of life, disease severity, and the caregiving experience. Journal of American Geriatrics Society, 49, 1066-1070.
28.
Karlikaya, G., Yukse, G., Varlibas, F., & Tireli, H. ( 2005). Caregiver burden in dementia: A study in the Turkish population. The Internet Journal of Neurology, 4(2). Retrieved from http://www.ispub.com/ostia/index.php?xmlFilePath=journals/ijn/vol4n2/dementia.xml
29.
Kumamoto, K., Arai, Y., Hashimoto, N., Ikeda, M., Mizuno, Y., & Washio, M. ( 2004). Problems family caregivers encounter in home care of patients with frontotemporal lobar degeneration. Psychogeriatrics , 4, 33-39.
30.
Landes, A.M., Sperry, S.D., Strauss, M.E., & Geldmacher, D.S. (2001). Apathy in Alzheimer’s disease. Journal of American Geriatrics Society, 49, 1700-1707.
31.
Liming-Alspaugh, M.E., Stephens, M.A.P., Townsend, A.L., Greene, R., & Zarit, S.H. ( 1999). Longitudinal Patterns of Risk for Depression in Dementia Caregivers: Objective and Subjective Primary Stress as Predictors . Psychology and Aging, 14(1), 34-43.
32.
Litvan, I. ( 2001). Therapy and management of frontal lobe dementia patients . Neurology, 56 (Supplement 4), S41-S45.
33.
LoGiudice, D., & Hassett, A. ( 2005). Uncommon dementia and the carer’s perspective . International Psychogeriatrics, 17 (Supplement), S223-231.
34.
Lovibond, P.F., & Lovibond, S.H. (1995). The Structure of Negative Emotional States: Comparison of the Depression Anxiety Stress Scales (DASS) with the Beck Depression and Anxiety Inventories. Behaviour Research and Therapy, 33(3), 335-343.
35.
Mahoney, R., Regan, C., Katona, C., & Livingston, G. (2005). Anxiety and depression in family caregivers of people with Alzheimer disease. The LASER-AD study. The American Journal of Geriatric Psychiatry, 13(9), 795-801.
36.
Martin-Cook, K., Trimmer, C., Svetlik, D., & Weiner, M.F. ( 2000). Caregiver burden in Alzheimer’s disease: Case studies . American Journal of Alzheimer’s Disease , 15(1), 47-52.
37.
Mendez, M.F., Perryman, K.M., Miller, B.L., & Cummings, J.L. (1998). Behavioural differences between frontotemporal dementia and Alzheimer’s disease: A comparison on the BEHAVE-AD Rating Scale. International Psychogeriatrics , 10(2), 155-162.
38.
Mendez, M.F., Selwood, A., Mastri, A.R., & Frey, W.H. ( 1993). Pick’s disease versus Alzheimer’s disease: A comparison of clinical characteristics. Neurology , 43, 289-292.
39.
Mourick, J.C., Rosso, S.M., Niermeijer, M.F., Duivenvoorden, H.J., van Swieten, J.C., & Tibben, A. ( 2004). Frontotemporal Dementia: Behavioural Symptoms and Caregiver Distress. Dementia and Geriatric Cognitive Disorders , 18(3-4), 299-306.
40.
Orrell, M., & Hancock, G. ( 2004). CANE: Camberwell assessment of need for the elderly. A needs assessment for older mental health service users. London: Gaskell.
41.
Ory, M.G., Hoffman, R.R., Yee, J.L., Tennstedt, S., & Schulz, R. ( 1999). Prevalence and impact of caregiving: A detailed comparison between dementia and nondementia caregivers. The Gerontologist , 39 (2), 177-185.
42.
Pijnenburg, Y.A.L., Gillissen, F., Jonker, C., & Scheltens, P. ( 2004). Initial Complaints in Frontotemporal Lobar Degeneration . Dementia and Geriatric Cognitive Disorders, 17(4), 302-306.
43.
Pinquart, M., & Sorensen, S. ( 2003). Differences between caregivers and noncaregivers in psychological health and physical health: A meta-analysis. Psychology and Aging, 18(2), 250-267.
44.
Redinbaugh, E.M., MacCullum, R.C., & Kiecolt-Glaser, J.K. (1995). Recurrent syndromal depression in caregivers. Psychology and aging, 10(3), 358-368.
45.
Reynolds, T., Thornicroft, G., Abas, M., Woods, B., Hoe, J., Leese, M., et al. (2000). Camberwell Assessment of Need for the Elderly . British Journal of Psychiatry, 176, 444-452.
46.
Rinaldi, P., Spazzafuma, L., Mastriforti, R., Mattioli, P., Marvardi, M., Polidori, M.C., et al. (2005). Predictors of high level of burden and distress in caregivers of demented patients: results of an Italian multicenter study. International Journal of Geriatric Psychiatry, 20, 168-174.
47.
Robinson, K.M., Adkisson, P., & Weinrich, S. ( 2001). Problem behaviours, caregiver reactions, and impact among caregivers of persons with Alzheimer’s disease. Journal of Advanced Nursing, 36 (4), 573-582.
48.
Rogan, S., & Lippa, C.F. ( 2002). Alzheimer’s disease and other dementia: A review . American Journal of Alzheimer’s Disease and Other Dementias, 17(1), 11-17.
49.
Roth, D.L., Gitlin, L.N., Coon, D.W., Stevens, A.B., Burgio, L.D., Gallagher-Thompson, D. et al. (2003). Psychometric analysis of the revised memory and behaviour problems checklist: Factor structure of occurrence and reaction ratings. Psychology and Aging, 18(4), 906-915.
50.
Savorani, G., Vulcano, V., Boni, S., Sarti, G., & Ravaglia, G. ( 1998). Behavioural Disorders in Dementia Patients and their Impact on the Stress of Caregiving Relatives: The "ARAD" Questionnaire . Archives of Gerontology and Geriatric Supplement, 6, 481-485.
51.
Sink, K.M., Covinsky, K.E., Barnes, D.E., Newcomer, R.J., & Yaffe, K. ( 2006). Caregiver characteristics are associated with neuropsychiatric symptoms of dementia. Journal of American Geriatrics Society , 54, 796-803.
52.
Snowden, J.S., Bathgate, D., Varma, A., Blackshaw, A., Gibbons, Z.C., & Neary, D. ( 2001). Distinct behavioural profiles in frontotemporal dementia and semantic dementia. Journal of Neurology, Neurosurgery and Psychiatry, 70, 323-332.
53.
Tabachnick, B.G. & Fidell, L.S. ( 2007). Using multivariate statistics (5th ed.). New York: Pearson International .
54.
Talerico, K.A., & Evans, L.K. ( 2001). Responding to safety issues in frontotemporal dementias . Neurology, 56 (Supplement 4), S51-S55.
55.
Teri, L., Truax, P., Logsdon, R., Uomoto, J., Vitaliano, P.P., & Zarit, S. ( 1992). Assessment of Behavioural Problems in Dementia: The Revised Memory and Behaviour Problems Checklist. Psychology and Aging , 7(4), 622-631.
56.
Vitaliano, P.P., Scanlon, J.M., & Zhang, J. ( 2003). Is caregiving hazardous to one’s physical health? A meta-analysis. Psychological Bulletin, 129(6), 946-972.
57.
Vitaliano, P.P., Young, H.M., & Russo, J. ( 1991). Burden: A review of measures used among caregivers of individuals with dementia. The Gerontologist, 31(1), 67-75.
58.
Wackerbath, S.B., & Johnson, M.M.S. (2002). Essential information and support needs of family caregivers. Patient Education and Counseling, 47, 95-100.
59.
Walters, K., Iliffe, S., Tai, S.S., & Orrell, M. ( 2000). Assessing needs from patient, carer and professional perspectives: the Camberwell Assessment of Need for Elderly People in Primary Care. Age and Aging, 29, 505-510.
60.
Yeaworth, R.C., & Burke, W.J. ( 2000). Frontotemporal Dementia: A Different Kind of Dementia . Archives of Psychiatric Nursing, 14(5), 249-253.
61.
Youn, G., Jeong, H., Knight, B.G., & Benton, D. ( 1999). Differences in familism values and caregiving outcomes among Korean, Korean American, and White American dementia caregivers . Psychologies and Aging, 14(3), 355-364.
62.
Zanetti, O., Frisoni, G.B., Bianchetti, A., Tamanza, G., Cigoli, V., & Trabucchi, M. ( 1998). Depressive Symptoms of Alzheimer Caregivers are mainly due to Personal rather than Patient Factors. International Journal of Geriatric Psychiatry, 13, 358-367.
63.
Zarit, S.H., Reever, K.E., & Bach-Peterson, J. (1980). Relatives of the Impaired Elderly: Correlates of Feelings of Burden. The Gerontologist , 20(6), 649-655.
