Caring for children of parents with frontotemporal degeneration: A report of the AFTD task force on families with children

American Journal of Alzheimer's Disease and other Dementias

Volumn 27, Issue 8, 2012, Pages 568-578

  Denny, Sharon S ^a   Morhardt, Darby ^b   Gaul, J Elise ^c   Lester, Paul ^d   Andersen, Gail ^d   Higgins, Paul J ^e   Nee, Linda ^f  

^a Association for Frontotemporal Degeneration Radnor   (United States)

^b NORTHWESTERN UNIVERSITY   (United States)

^c Center for Grieving Children   (United States)

^d AFTD Parents Support Group Radnor   (United States)

^e Keller Independent School District   (United States)

^f NATIONAL INSTITUTE OF NEUROLOGICAL DISORDERS AND STROKE   (United States)

Author keywords

caregivers; children and teens; children's bereavement; frontotemporal degeneration; young onset dementia

Indexed keywords

ADULT; AGED; ARTICLE; CHILD CARE; CHILD PARENT RELATION; CLINICAL ARTICLE; COMMUNITY; FAMILY; FEMALE; FRONTOTEMPORAL DEMENTIA; HEALTH SURVEY; HUMAN; MALE; MEDICAL SOCIETY; PARENT; RESOURCE MANAGEMENT; SPOUSE; SUPPORT GROUP;

EID: 84869007770     PISSN: 15333175     EISSN: 19382731     Source Type: Journal    
DOI: 10.1177/1533317512459791     Document Type: Article

References (23)

1. Knopman DS, Roberts RO. Estimating the number of persons with frontotemporal lobar degeneration in the US population. J Mol Neurosci. 2011; 45 (3). 330-335
2. CurePSPTimoniumMD.The Foundation for PSP, CBD and Related Disorder; c 2007-2011. http://www.psp.org/about/. Accessed April 11, 2011.
3. The Genetics of FTD-Should You Worry? What if It's Not Alzheimer's. Radin L Radin G, ed. Amherst, NY: Prometheus Books; 2008 :
4. Kaiser S, Panegyres PK. The psychosocial impact of young onset dementia on spouses. Am J Alzheimers Dis Other Demen. 2006; 21 (6). 398-402 (Pubitemid 46036145)
5. Freyne A, Kidd N, Coen R, Lawlor BA. Burden in carers of dementia patients: higher levels in carers of younger sufferers. Int J Geriatr Psychiatry. 1999; 14 (9). 784-788 (Pubitemid 29450292)
6. Luscombe G, Brodaty H, Freeth S.. Younger people with dementia: Diagnostic issues, effects on carers and use of services. Int J Geriatr Psychiatry. 1998; 13 (5). 323-330 (Pubitemid 28254582)
7. The Association for Frontotemporal Degeneration "The AFTD Task Force on Families with Children-Report of Findings," 2012. http://www.theaftd. org/support-resources/caregiving-challenges/children-and-teens.
8. Weintraub S, Morhardt D.. Treatment, education and resources for non- Alzheimer dementia: One size does not fit all. Alzheim Care Q. 2005; 6 (3). 201-215
9. Svanberg E, Stott J, Spector A. The impact of young onset dementia on the family: a literature review. Int Psychogeriatr. 2011; 23 (3). 356-371
10. Svanberg E, Stott J. Spector A. 'Just helping': Children living with a parent with young onset dementia. Aging Ment Health. 2010; 14 (6). 740-751
11. Schulz R, Boerner K, Shear K, Zhan S, Gitlin LN. Predictors of complicated grief among dementia caregivers: A prospective study of bereavement. Am J Geriatr Psychiatry. 2006; 14 (8). 650-658 (Pubitemid 44196264)
12. Frank J.. Evidence for grief as the major barrier faced by Alzheimer caregivers: A qualitative analysis. Am J Alzheimers Dis Other Demen. 2007; 22 (6). 516-527 (Pubitemid 351176919)
13. Holley CK, Mast BT. The impact of anticipatory grief on caregiver burden in dementia caregivers. Gerontologist.. 2009 Jun; 49 (3). 388-96
14. Noyes BB, Hill RD, Hicken BL, et al. The role of grief in dementia caregiving. Am J Alzheimers Dis Other Demen. 2010; 25 (1). 9-17
15. Frank J. Supportive Care for the Person with Dementia. Hughes J Lloyd-Williams M Sachs G, ed. New York: Oxford University Press; 2010 :
16. Siegel K, Mesagno FP, Karus D, Christ G, Banks K, Moynihan R. Psychosocial adjustment of children with a terminally ill parent. J Am Acad Child Adolesc Psychiatry. 1992; 31 (2). 327-333
17. Saldinger A, Cain A, Porterfield K. Managing traumatic stress in children anticipating parental death. Psychiatry. 2003; 66 (2). 168-181 (Pubitemid 36869717)
18. Dowdney L. Childhood bereavement following a parent death. J Child Psychol Psychiatry. 2000; 41 (7). 819-830
19. Cerel J, Fristad MA, Verducci J, Weller RA, Weller EB. Childhood bereavement: psychopathology in the 2 years postparental death. J Am Acad Child Adolesc Psychiatry. 2006; 45 (6). 681-690 (Pubitemid 43833101)
20. Worden W Children and Grief: When a Parent Dies. New York, NY: Guilford Press; 1996 :
21. Sandler IN, Wolchik SA, Ayers TS. Resilience rather than recovery: a contextual framework on adaptation following bereavement. Death Stud. 2008; 32 (1). 59-73
22. ClewettNSlowleyMGlowerJ.Making plans: using family group conferencing to reduce the impact of caring on young people, Barnardo's: Essex; 2010. http://www.barnardos.org.uk/making-plans-12634.pdf. Accessed August 10, 2010.
23. LeadbitterH. Whole family pathway: a resource for practitioners, The Children's Society. 2008. http://www.youngcarer.com/sites/default/files/imce- user-files/Resources/WFP/whole-family-pathway.pdf. http://www.barnardos.org.uk/ making-plans-12634.pdf. Accessed August 10, 2010.