Enhancement of carer skills and patient function in the non-pharmacological management of frontotemporal dementia (FTD): A call for randomised controlled studies

O'Connor, Claire M.; Clemson, Lindy; Silva, Thaís Bento Lima da; Piguet, Olivier; Hodges, John R.; Mioshi, Eneida

doi:10.1590/S1980-57642013DN70200002

ABSTRACT

FTD is a unique condition which manifests with a range of behavioural symptoms, marked dysfunction in activities of daily living (ADL) and increased levels of carer burden as compared to carers of other dementias. No efficacious pharmacological interventions to treat FTD currently exist, and research on pharmacological symptom management is variable. The few studies on non-pharmacological interventions in FTD focus on either the carer or the patients' symptoms, and lack methodological rigour. This paper reviews and discusses current studies utilising non-pharmacological approaches, exposing the clear need for more rigorous methodologies to be applied in this field. Finally, a successful randomised controlled trial helped reduce behaviours of concern in dementia, and through implementing participation in tailored activities, the FTD-specific Tailored Activities Program (TAP) is presented. Crucially, this protocol has scope to target both the person with FTD and their carer. This paper highlights that studies in this area would help to elucidate the potential for using activities to reduce characteristic behaviours in FTD, improving quality of life and the caregiving experience in FTD.

Key words:
frontotemporal dementia; non-pharmacological intervention; functional disability; randomised controlled trial

RESUMO

A DFT é uma condição única que se manifesta por uma variedade de sintomas, principalmente em atividades da vida diária (AVD) e aumento da carga sobre os cuidadores em comparação aos cuidadores de outras demências. Não existe nenhuma intervenção farmacológica para tratamento da DFT até o momento e pesquisas sobre o manejo farmacológico dos sintomas são variáveis.Os poucos estudos em intervenção não farmacológica em DFT focam nos cuidadores ou em sintomas dos pacientes, faltando rigor metodológico. Este artigo revisa e discute os estudos atuais que utilizam abordagem não farmacológica, o que expõe a clara necessidade para metodologias mais rigorosas a serem aplicadas neste campo. Finalmente, um ensaio clinico randomizado bem sucedido ajudou na redução de comportamentos em demência, através da implementação da participação em atividades ajustadas, é apresentado o FTD-specific Tailored Activities Program (TAP). Este protocolo visa abordar tanto o paciente com DFT quanto seu cuidador. Este manuscrito evidencia que pesquisas dentro desta area ajudariam a elucidar o potencial em usar estas atividades para redução dos comportamentos característicos em DFt, melhorando a qualidade de vida e experiências dos cuidadores em DFT.

Palavras-chave:
demência frontotemporal; intervenção não farmacológica; ensaio clinico randomizado; incapacidade funcional

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REFERENCES

Hodges JR. Frontotemporal dementia (Pick's disease): Clinical features and assessment. Neurology 2001;56(Suppl 4):S6-S10.
Raskovsky K, Hodges JR, Knopman D, et al. Sensitivity of revised diagnostic criteria for the behavioural variant of frontotemporal dementia. Brain 2011;134:2456-2477.
Gorno-Tempini ML, Hillis Ae, Weintraub S, et al. Classification of primary progressive aphasia and its variants. Neurology 2011;76:1006-1014.
Neary D, Snowden JS, Gustafson L, et al. Frontotemporal lobar degeneration: A consensus on clinical diagnostic criteria. Neurology1998; 51:1546-1554.
Hodges JR, Patterson K. Semantic dementia: A unique clinicopathological syndrome. Lancet Neurol 2007;6:1004-1014.
Rosen HJ, Allison SC, Ogar JM, et al. Behavioural features in semantic dementia vs other forms of progressive aphasias. Neurology2006; 67:1752-1756.
Chow TW, Miller BL, Boone K, Mishkin F, Cummings JL. Frontotemporal dementia classification and neuropsychiatry. Neurologist 2002;8:263-269.
Kertesz A, McMonagle P, Blair M, Davidson W, Munoz DG. The evolution and pathology of frontotemporal dementia. Brain2005;128:1996-2005.
Hodges JR, Davies RR, Xuereb JH, et al. Clinicopathological correlates in frontotemporal dementia. Ann Neurol 2004;56:399-406.
Mendez MF, Perryman KM. Neuropsychiatric features of frontotemporal dementia: Evaluation of consensus criteria and review. J Neuropsychiatry Clin Neurosci 2002;14:424-429.
Kipps CM, Mioshi E, Hodges JR. Emotion, social functioning and activities of daily living in frontotemporal dementia. Neurocase 2009;15:182-189.
Mioshi E, Kipps CM, Dawson K, Mitchell J, Graham A, Hodges JR. Activities of daily living in frontotemporal dementia and Alzheimer disease. Neurology2007;68:2077-2084.
Wicklund AH, Johnson N, Rademaker A, Weitner BB, Weintraub S. Profiles of decline in activities of daily living in non-Alzheimer dementia. Alzheimer Dis Assoc Disord 2007;21:8-13.
Mioshi E, Hodges JR. Rate of change of functional abilities in frontotemporal dementia. Dement Geriatr Cogn Disord 2009;28:419-426.
Mioshi E, Hsieh S, Savage S, Hornberger M, Hodges JR. Clinical staging and disease progression in frontotemporal dementia. Neurology2010;74:1591-1597.
Passant U, Elfgren C, Englund E, Gustafson L. Psychiatric symptoms and their psychosocial consequences in frontotemporal dementia. Alzheimer Dis Assoc Disord2005;19(Suppl. 1):S15-S18.
Mioshi E, Kipps CM, Hodges JR. Activities of daily living in behavioural variant frontotemporal dementia. Alzheimer Dis Assoc Disord2009;23:70-76.
Mourik JC, Rosso SM, Niermeijer MF, et al. Frontotemporal dementia: Behavioral symptoms and caregiver distress. Dement Geriatr Cogn Disord2004;18:299-306.
Riedijk SR, DeVugt ME, Duivenvoorden HJ, et al. Caregiver burden, health-related quality of life and coping in dementia caregivers: A comparison of frontotemporal dementia and Alzheimer's disease. Dement Geriatr Cogn Disord2006;22:405-412.
Boutoleau-Bretonniere C, Vercelletto M, Volteau C, Renou P, Lamy E. Zarit burden inventory and activities of daily living in the behavioral variant of frontotemporal dementia. Dement Geriatr Cogn Disord2008;25:272-277.
Nunnemann S, Kurz A, Leucht S, Diehl-Schmid J. Caregivers of patients with frontotemporal lobar degeneration: A review of burden, problems, needs, and interventions. Int Psychogeriatr 2012;24:1368-1386.
Mioshi E, Foxe D, Leslie F, et al. The impact of dementia severity on caregiver burden in frontotemporal dementia and Alzheimer disease. Alzheimer Dis Assoc Disord2013;27:68-73.
Hodges JR. Hope abandoned: Memantine therapy in frontotemporal dementia. Lancet Neurol2013;12:121-123.
Josephs KA, Hodges JR, Snowden JS, et al. Neuropathological background of phenotypical variability in frontotemporal dementia. Acta Neuropathol 2011;122:137-153.
Boxer AL, Knopman DS, Kaufer DI, et al. Memantine in patients with frontotemporal lobar degeneration: A multicentre, randomised, double-blind, placebo-controlled trial. Lancet Neurol2013;12:149-156.
Jicha GA, Nelson PT. Management of frontotemporal dementia: targeting symptom management in such a heterogeneous disease requires a wide range of therapeutic options. Neurodegener Dis Manag 2011; 1:141-156.
Massimo L, Grossman M. Patient care and management of frontotemporal lobar degeneration. Am J Alzheimers Dis Other Demen 2008; 23:125-131.
da Gloria Portugal M, Marinho V, Laks J. Pharmacological treatment of frontotemporal lobar degeneration: Systematic review. Rev Bras Psiq 2011;33:81-90.
Banks S, Rogalski E, Medina J, Skoglund A, Morhardt D. Organizing a series of educational and support conferences for caregivers of individuals with frontotemporal dementia and primary progressive aphasia. Alzheimers Care Q 2006;7:243-250.
Grinberg A, Lagunoff J, Phillips D, Stern B, Goodman M, Chow T. Multidisciplinary design and implementation of a day program specialized for the frontotemporal dementias. Am J Alzheimers Dis Other Demen2008;22:499-506.
Ibach B, Koch H, Koller M, Hajak G, Putzhammer A. The situation of caregiver counselling in patients with frontotemporal lobar dementia in old psychiatry. Psychiatr Prax 2004;31(Suppl 1):S120-S122.
Merrilees J. A model for management of behavioural symptoms in frontotemporal lobar degeneration. Alzheimer Dis Assoc Disord2007;21: S64-S69.
Rosness TA, Haugen PK, Engedal K. Support to family carers of patients with frontotemporal dementia. Aging & Mental Health 2008;12:462-466.
Mendez MF. Frontotemporal dementia: Therapeutic interventions. In: Giannakopoulos P, Hof PR, editors. Dementia in Clinical Practice. 24. Basel: Karger; 2009:168-178.
Diehl J, Mayer T, Forstl H, Kurz A. A support group for caregivers of patients with frontotemporal dementia. Dementia 2003;2:151-161.
Diehl J, Mayer T, Kurz A, Forstl H. [Features of frontotemporal dementia from the perspective of a special family support group]. Nervenarzt 2003;74:445-449.
Marziali E, Climans R. New technology to connect frontotemporal dementia spousal caregivers online. Canadian Review of Alzheimer's Disease and Other Dementias. 2009;12:23-27.
Brodaty H, Green A, Koschera A. Meta-analysis of psychosocial interventions for caregivers of people with dementia. J Am Geriatr Soc. 2003;51:657-64.
Sorensen S, Pinquart M, Duberstein P. How effective are interventions with caregivers? An updated meta-analysis. Gerontologist 2002;42: 356-372.
Taylor MC. Evidence-based practice for occupational therapists. 2 ed. Oxford: Blackwell Publishing; 2007.
Mohandas E, Rajmohan V. Frontotemporal dementia: An updated overview. Indian J Psychiatry 2009;51(Suppl 1):S65-S69.
Mioshi E, McKinnon C, Savage S, O'Connor CM, Hodges JR. Improving burden and coping skills in frontotemporal dementia caregivers: A pilot study. Alzheimer Dis Assoc Disord2013;27:84-86.
Hebert R, Levesque L, Vezina J, et al. Efficacy of a psychoeducative group program for caregivers of demented persons living at home: A randomized controlled trial. J Gerontol B Psychol Sci Soc Sci 2003; 58B:S58-S67.
McKinnon C, O'Connor CM, Savage S, Hodges JR, Mioshi E. Qualitative results of a structured group program for carers of people with frontotemporal dementia. Int J Geriatr Psychiatry 2013;28:216-218.
Grinberg A, Phillips D. The impact of a community day program on the lives of patients with frontotemporal dementia and their caregivers. Canadian Review of Alzheimer's Disease and Other Dementias2009;12:17-23.
Yamakawa M, Shigenobu K, Makimoto K, Zhu C, Ashida N, Tabushi K. Environmental control interventions for frontotemporal dementia with reversed sleep-wake cycles. Am J Alzheimers Dis Other Demen2008;23:470-476.
Lough S, Hodges JR. Measuring and modifying abnormal social cognition in frontal variant frontotemporal dementia. J Psychosom Res 2002;53:639-646.
Raglio A, Bellandi D, Baiardi P, Gianotti M, Ubezio MC, Granieri E. Music therapy in frontal temporal dementia: A case report. J Am Geriatr Soc2012;60:1578-1579.
Litvan I. Therapy and management of frontal lobe dementia patients. Neurology2001;56(Suppl 4):S41-S45.
Chow TW, Pio FJ, Rockwood K. An international needs assessment of caregivers for frontotemporal dementia. Can J Neurol Sci 2011;38:753-757.
Merrilees J, Miller BL. Long-term care of patients with frontotemporal dementia. J Am Med Dir Assoc. 2003;4:S162-S164.
Ikeda M, Tanabe H, Horino T, et al. Care for patients wit Pick's disease--by using their preserved procedural memory. Seishin Shinkeigaku Zasshi 1995;97:179-192.
Shigenobu K, Ikeda M. Care for the patients with frontotemporal lobar degeneration. Brain Nerve 2009;61:1337-1342.
Gitlin LN, Winter L, Burke J, Chernett N, Dennis MP, Huack WW. Tailored Activities to manage neuropsychiatric behaviors in persons with dementia and reduce caregiver burden: A randomized pilot study. Am J Geriatr Psychiatry. 2008;16:229-239.
Morhardt D. Accessing community-based and long-term care services: Challenges facing persons with frontotemporal dementia and their families. J Mol Neurosci 2011;45:737-741.
Robinson KM. Rehabilitation applications in caring for patients with Pick's disease and frontotemporal dementias. Neurology2001;56(Suppl. 4):S56-S58.
Talerico KA, Evans LK. Responding to safety issues in frontotemporal dementia. Neurology2001;56(Suppl. 4):S52-S55.
Piguet O, Hornberger M, Mioshi E, Hodges JR. Behavioural-variant frontotemporal dementia: Diagnosis, clinical staging, and management. Lancet Neurol2011;10:162-172.
Rabinovici GD, Miller BL. Frontotemporal lobar degeneration: Epidemiology, pathophysiology, diagnosis and management. CNS Drugs 2010;24:375-398.
Gitlin LN, Winter L, Earland TV, et al. The Tailored Activity Program to reduce behavioral symptoms in individuals with dementia: Feasibility, acceptability, and replication potential. Gerontologist2009;49:428-439.
Merrilees J, Ketelle R. Advanced practice nursing: Meeting the caregiving challenges for families of persons with frontotemporal dementia. Clin Nurse Spec 2010;24:245-251.
Manoochehri M, Huey ED. Diagnosis and management of behavioral issues in frontotemporal dementia. Curr Neurol Neurosci Rep 2012; 12:528-536.
Neary D, Snowden J, Mann D. Frontotemporal dementia. Lancet Neurol2005;4:771-780.
Mekala S, Alladi S, Chandrasekar K, et al. Cultural differences are reflected in variables associated with carer burden in FTD: A comparison study between India and Australia. Dement Neuropsychol 2013;7:104-109.
Mioshi E, Bristow M, Cook R, Hodges JR. Factors underlying caregiver stress in frontotemporal dementia and Alzheimer's disease. Dement Geriatr Cogn Disord2009;27:76-81.
National Health and Medical Research Council: Additional levels of evidence and grades for recommendations for developers of guidelines: Final draft. Canberra: National Health and Medical Research Council; 2009.

Conflicts of interest and source of funding. EM is a recipient of a National Health Medical Research Council of Australia Early Career Fellowship (APP1016399). OP is supported by an NHMRC Clinical Career Development Fellowship (APP1022684). JRH is supported by a NHMRC Program Grant. LC is supported by an NHMRC Career Development Fellowship (APP1036639). For the remaining authors none were declared

Publication Dates

Publication in this collection
Apr-Jun 2013

History

Received
22 Mar 2012
Accepted
23 May 2013

This is an open-access article distributed under the terms of the Creative Commons Attribution License

[1] Hodges JR. Frontotemporal dementia (Pick's disease): Clinical features and assessment. Neurology 2001;56(Suppl 4):S6-S10.

[2] Raskovsky K, Hodges JR, Knopman D, et al. Sensitivity of revised diagnostic criteria for the behavioural variant of frontotemporal dementia. Brain 2011;134:2456-2477.

[3] Gorno-Tempini ML, Hillis Ae, Weintraub S, et al. Classification of primary progressive aphasia and its variants. Neurology 2011;76:1006-1014.

[4] Neary D, Snowden JS, Gustafson L, et al. Frontotemporal lobar degeneration: A consensus on clinical diagnostic criteria. Neurology1998; 51:1546-1554.

[5] Hodges JR, Patterson K. Semantic dementia: A unique clinicopathological syndrome. Lancet Neurol 2007;6:1004-1014.

[6] Rosen HJ, Allison SC, Ogar JM, et al. Behavioural features in semantic dementia vs other forms of progressive aphasias. Neurology2006; 67:1752-1756.

[7] Chow TW, Miller BL, Boone K, Mishkin F, Cummings JL. Frontotemporal dementia classification and neuropsychiatry. Neurologist 2002;8:263-269.

[8] Kertesz A, McMonagle P, Blair M, Davidson W, Munoz DG. The evolution and pathology of frontotemporal dementia. Brain2005;128:1996-2005.

[9] Hodges JR, Davies RR, Xuereb JH, et al. Clinicopathological correlates in frontotemporal dementia. Ann Neurol 2004;56:399-406.

[10] Mendez MF, Perryman KM. Neuropsychiatric features of frontotemporal dementia: Evaluation of consensus criteria and review. J Neuropsychiatry Clin Neurosci 2002;14:424-429.

[11] Kipps CM, Mioshi E, Hodges JR. Emotion, social functioning and activities of daily living in frontotemporal dementia. Neurocase 2009;15:182-189.

[12] Mioshi E, Kipps CM, Dawson K, Mitchell J, Graham A, Hodges JR. Activities of daily living in frontotemporal dementia and Alzheimer disease. Neurology2007;68:2077-2084.

[13] Wicklund AH, Johnson N, Rademaker A, Weitner BB, Weintraub S. Profiles of decline in activities of daily living in non-Alzheimer dementia. Alzheimer Dis Assoc Disord 2007;21:8-13.

[14] Mioshi E, Hodges JR. Rate of change of functional abilities in frontotemporal dementia. Dement Geriatr Cogn Disord 2009;28:419-426.

[15] Mioshi E, Hsieh S, Savage S, Hornberger M, Hodges JR. Clinical staging and disease progression in frontotemporal dementia. Neurology2010;74:1591-1597.

[16] Passant U, Elfgren C, Englund E, Gustafson L. Psychiatric symptoms and their psychosocial consequences in frontotemporal dementia. Alzheimer Dis Assoc Disord2005;19(Suppl. 1):S15-S18.

[17] Mioshi E, Kipps CM, Hodges JR. Activities of daily living in behavioural variant frontotemporal dementia. Alzheimer Dis Assoc Disord2009;23:70-76.

[18] Mourik JC, Rosso SM, Niermeijer MF, et al. Frontotemporal dementia: Behavioral symptoms and caregiver distress. Dement Geriatr Cogn Disord2004;18:299-306.

[19] Riedijk SR, DeVugt ME, Duivenvoorden HJ, et al. Caregiver burden, health-related quality of life and coping in dementia caregivers: A comparison of frontotemporal dementia and Alzheimer's disease. Dement Geriatr Cogn Disord2006;22:405-412.

[20] Boutoleau-Bretonniere C, Vercelletto M, Volteau C, Renou P, Lamy E. Zarit burden inventory and activities of daily living in the behavioral variant of frontotemporal dementia. Dement Geriatr Cogn Disord2008;25:272-277.

[21] Nunnemann S, Kurz A, Leucht S, Diehl-Schmid J. Caregivers of patients with frontotemporal lobar degeneration: A review of burden, problems, needs, and interventions. Int Psychogeriatr 2012;24:1368-1386.

[22] Mioshi E, Foxe D, Leslie F, et al. The impact of dementia severity on caregiver burden in frontotemporal dementia and Alzheimer disease. Alzheimer Dis Assoc Disord2013;27:68-73.

[23] Hodges JR. Hope abandoned: Memantine therapy in frontotemporal dementia. Lancet Neurol2013;12:121-123.

[24] Josephs KA, Hodges JR, Snowden JS, et al. Neuropathological background of phenotypical variability in frontotemporal dementia. Acta Neuropathol 2011;122:137-153.

[25] Boxer AL, Knopman DS, Kaufer DI, et al. Memantine in patients with frontotemporal lobar degeneration: A multicentre, randomised, double-blind, placebo-controlled trial. Lancet Neurol2013;12:149-156.

[26] Jicha GA, Nelson PT. Management of frontotemporal dementia: targeting symptom management in such a heterogeneous disease requires a wide range of therapeutic options. Neurodegener Dis Manag 2011; 1:141-156.

[27] Massimo L, Grossman M. Patient care and management of frontotemporal lobar degeneration. Am J Alzheimers Dis Other Demen 2008; 23:125-131.

[28] da Gloria Portugal M, Marinho V, Laks J. Pharmacological treatment of frontotemporal lobar degeneration: Systematic review. Rev Bras Psiq 2011;33:81-90.

[29] Banks S, Rogalski E, Medina J, Skoglund A, Morhardt D. Organizing a series of educational and support conferences for caregivers of individuals with frontotemporal dementia and primary progressive aphasia. Alzheimers Care Q 2006;7:243-250.

[30] Grinberg A, Lagunoff J, Phillips D, Stern B, Goodman M, Chow T. Multidisciplinary design and implementation of a day program specialized for the frontotemporal dementias. Am J Alzheimers Dis Other Demen2008;22:499-506.

[31] Ibach B, Koch H, Koller M, Hajak G, Putzhammer A. The situation of caregiver counselling in patients with frontotemporal lobar dementia in old psychiatry. Psychiatr Prax 2004;31(Suppl 1):S120-S122.

[32] Merrilees J. A model for management of behavioural symptoms in frontotemporal lobar degeneration. Alzheimer Dis Assoc Disord2007;21: S64-S69.

[33] Rosness TA, Haugen PK, Engedal K. Support to family carers of patients with frontotemporal dementia. Aging & Mental Health 2008;12:462-466.

[34] Mendez MF. Frontotemporal dementia: Therapeutic interventions. In: Giannakopoulos P, Hof PR, editors. Dementia in Clinical Practice. 24. Basel: Karger; 2009:168-178.

[35] Diehl J, Mayer T, Forstl H, Kurz A. A support group for caregivers of patients with frontotemporal dementia. Dementia 2003;2:151-161.

[36] Diehl J, Mayer T, Kurz A, Forstl H. [Features of frontotemporal dementia from the perspective of a special family support group]. Nervenarzt 2003;74:445-449.

[37] Marziali E, Climans R. New technology to connect frontotemporal dementia spousal caregivers online. Canadian Review of Alzheimer's Disease and Other Dementias. 2009;12:23-27.

[38] Brodaty H, Green A, Koschera A. Meta-analysis of psychosocial interventions for caregivers of people with dementia. J Am Geriatr Soc. 2003;51:657-64.

[39] Sorensen S, Pinquart M, Duberstein P. How effective are interventions with caregivers? An updated meta-analysis. Gerontologist 2002;42: 356-372.

[40] Taylor MC. Evidence-based practice for occupational therapists. 2 ed. Oxford: Blackwell Publishing; 2007.

[41] Mohandas E, Rajmohan V. Frontotemporal dementia: An updated overview. Indian J Psychiatry 2009;51(Suppl 1):S65-S69.

[42] Mioshi E, McKinnon C, Savage S, O'Connor CM, Hodges JR. Improving burden and coping skills in frontotemporal dementia caregivers: A pilot study. Alzheimer Dis Assoc Disord2013;27:84-86.

[43] Hebert R, Levesque L, Vezina J, et al. Efficacy of a psychoeducative group program for caregivers of demented persons living at home: A randomized controlled trial. J Gerontol B Psychol Sci Soc Sci 2003; 58B:S58-S67.

[44] McKinnon C, O'Connor CM, Savage S, Hodges JR, Mioshi E. Qualitative results of a structured group program for carers of people with frontotemporal dementia. Int J Geriatr Psychiatry 2013;28:216-218.

[45] Grinberg A, Phillips D. The impact of a community day program on the lives of patients with frontotemporal dementia and their caregivers. Canadian Review of Alzheimer's Disease and Other Dementias2009;12:17-23.

[46] Yamakawa M, Shigenobu K, Makimoto K, Zhu C, Ashida N, Tabushi K. Environmental control interventions for frontotemporal dementia with reversed sleep-wake cycles. Am J Alzheimers Dis Other Demen2008;23:470-476.

[47] Lough S, Hodges JR. Measuring and modifying abnormal social cognition in frontal variant frontotemporal dementia. J Psychosom Res 2002;53:639-646.

[48] Raglio A, Bellandi D, Baiardi P, Gianotti M, Ubezio MC, Granieri E. Music therapy in frontal temporal dementia: A case report. J Am Geriatr Soc2012;60:1578-1579.

[49] Litvan I. Therapy and management of frontal lobe dementia patients. Neurology2001;56(Suppl 4):S41-S45.

[50] Chow TW, Pio FJ, Rockwood K. An international needs assessment of caregivers for frontotemporal dementia. Can J Neurol Sci 2011;38:753-757.

[51] Merrilees J, Miller BL. Long-term care of patients with frontotemporal dementia. J Am Med Dir Assoc. 2003;4:S162-S164.

[52] Ikeda M, Tanabe H, Horino T, et al. Care for patients wit Pick's disease--by using their preserved procedural memory. Seishin Shinkeigaku Zasshi 1995;97:179-192.

[53] Shigenobu K, Ikeda M. Care for the patients with frontotemporal lobar degeneration. Brain Nerve 2009;61:1337-1342.

[54] Gitlin LN, Winter L, Burke J, Chernett N, Dennis MP, Huack WW. Tailored Activities to manage neuropsychiatric behaviors in persons with dementia and reduce caregiver burden: A randomized pilot study. Am J Geriatr Psychiatry. 2008;16:229-239.

[55] Morhardt D. Accessing community-based and long-term care services: Challenges facing persons with frontotemporal dementia and their families. J Mol Neurosci 2011;45:737-741.

[56] Robinson KM. Rehabilitation applications in caring for patients with Pick's disease and frontotemporal dementias. Neurology2001;56(Suppl. 4):S56-S58.

[57] Talerico KA, Evans LK. Responding to safety issues in frontotemporal dementia. Neurology2001;56(Suppl. 4):S52-S55.

[58] Piguet O, Hornberger M, Mioshi E, Hodges JR. Behavioural-variant frontotemporal dementia: Diagnosis, clinical staging, and management. Lancet Neurol2011;10:162-172.

[59] Rabinovici GD, Miller BL. Frontotemporal lobar degeneration: Epidemiology, pathophysiology, diagnosis and management. CNS Drugs 2010;24:375-398.

[60] Gitlin LN, Winter L, Earland TV, et al. The Tailored Activity Program to reduce behavioral symptoms in individuals with dementia: Feasibility, acceptability, and replication potential. Gerontologist2009;49:428-439.

[61] Merrilees J, Ketelle R. Advanced practice nursing: Meeting the caregiving challenges for families of persons with frontotemporal dementia. Clin Nurse Spec 2010;24:245-251.

[62] Manoochehri M, Huey ED. Diagnosis and management of behavioral issues in frontotemporal dementia. Curr Neurol Neurosci Rep 2012; 12:528-536.

[63] Neary D, Snowden J, Mann D. Frontotemporal dementia. Lancet Neurol2005;4:771-780.

[64] Mekala S, Alladi S, Chandrasekar K, et al. Cultural differences are reflected in variables associated with carer burden in FTD: A comparison study between India and Australia. Dement Neuropsychol 2013;7:104-109.

[65] Mioshi E, Bristow M, Cook R, Hodges JR. Factors underlying caregiver stress in frontotemporal dementia and Alzheimer's disease. Dement Geriatr Cogn Disord2009;27:76-81.

[66] National Health and Medical Research Council: Additional levels of evidence and grades for recommendations for developers of guidelines: Final draft. Canberra: National Health and Medical Research Council; 2009.

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