Care is described as informal when provided by unpaid family members or friends, and formal when caretakers are paid. Though a small subset of individuals with HD are cared for in the home through end of life, formal paid home healthcare services are frequently utilized. However the vast majority of individuals with HD, as the intensity of care needs increase will transition to long-term care facilities. In this situation, many family caretakers continue to advocate for and provide care.
What is known about informal care in HD?
The Informal Care Experience: It is not known how many informal patient-years of care are provided by families and friends over the course of illness for a person with HD. And, for an unknown number, this includes intense late-stage care defined as need for help with daily activities and/or need for 24-hour supervision. Though studies are not recent and are regional, [Simpson SA 1989] [Bolt JM 1970] they report that the average time spent in long term care institutions is 2-8 years prior to death. This translates to many years of care given by informal carers.
Several studies report on the informal family or friend carer experience in HD [Aubeeluck AV 2012] [Skirton H 2010][Røthing M 2015]. Not surprisingly across studies and countries, the themes are consistent:
- Lack of health care provider knowledge about HD
- Insufficient or lack of availability of home health services for HD
- Lack of health care provider knowledge and appreciation of difficulties experienced by caretakers
- Lack of support services for carers
- Decreased carer quality of life on many levels
Though not done specifically for HD, this recent evidence-based study of carer services in Canada [Health Quality Ontario 2008] found services that were helpful or not for the caretaker, and whether these services were effective or ineffective in delaying institutionalization of the person with dementia:
- Teaching caregivers problem solving and coping techniques
- Involving patients in addition to caregivers
- Individual Behavioral Management Therapy
- Combination of the above interventions
- Education about the disease alone
- Individual supportive counseling therapy
- Group behavioral therapy
Respite therapy, though used infrequently alleviated stress of caregiver, but was not effective in delaying time to institutionalization.
Author's comments: Care-taking is a hard and often thankless job. For many it can also be a fulfilling experience too. Although advocacy organizations across the world work to improve education, support, and services, many individuals with HD and their carers desperately need more.
A highly praised resource is Jim Pollard's insightful A Caregivers's Handbook for Advanced Stage Huntington Disease published by the Huntington's Disease Society of Canada.
An impressive model of care recently reported from the Netherlands [Veenhuizen RB 2011] showed that a coordinated multidisciplinary care team that provided evaluation and care in both the clinic and in-home outreach was both feasible (in that country with publicly supported medical care systems) and enthusiastically appreciated by Huntington families. Wouldn't it be great to work towards such a system of care for HD . . .
Simpson SA, Johnston AW. The prevalence and patterns of care of Huntington's chorea in Grampian. Br J Psychiatry. 1989 Dec;155:799-804. PubMed abstract
Bolt JM. Huntington's chorea in the West of Scotland. Br J Psychiatry. 1970 Mar;116(532):259-70. PubMed abstract
Aubeeluck AV, Buchanan H, Stupple EJ. 'All the burden on all the carers': exploring quality of life with family caregivers of Huntington's disease patients. Qual Life Res. 2012 Oct;21(8):1425-35. doi: 10.1007/s11136-011-0062-x. Epub 2011 Nov 13. PubMed abstract
Skirton H, Williams JK, Jackson Barnette J, Paulsen JS. Huntington disease: families' experiences of healthcare services. J Adv Nurs. 2010 Mar;66(3):500-10. doi: 10.1111/j.1365-2648.2009.05217.x. PubMed abstract
Røthing M, Malterud K, Frich JC. Balancing needs as a family caregiver in Huntington's disease: a qualitative interview study. Health Soc Care Community. 2015 Sep;23(5):569-76. doi: 10.1111/hsc.12174. Epub 2014 Dec 4. PubMed abstract
Health Quality Ontario. Caregiver- and patient-directed interventions for dementia: an evidence-based analysis. Ont Health Technol Assess Ser. 2008;8(4):1-98. Epub 2008 Oct 1. PubMed abstract
Veenhuizen RB, Kootstra B, Vink W, Posthumus J, van Bekkum P, Zijlstra M, Dokter J. Coordinated multidisciplinary care for ambulatory Huntington's disease patients. Evaluation of 18 months of implementation. Orphanet J Rare Dis. 2011 Nov 18;6:77. doi: 10.1186/1750-1172-6-77. PubMed abstract