Caregiving for a person with later stage Huntington's disease is a loving long-term commitment that can bring rewarding fulfillment but sometimes may be hazardous to your health. Though some later studies do not confirm, an early often quoted study suggested that long-term caregivers who report emotional strain are at greater risk for medical illness and earlier death than those who are not caregivers. What are the health risks of caregiving? What can be done to give some relief for caregiver strain?

The early Caregiver Health Effects Study [Schulz R 1999], which has been highly quoted, followed almost 400 caregivers for a four year period and compared their health status to adults of the same age who were not caregivers. Though participants in this study were all older than 65, the results might apply in similar ways to younger caregivers caring for individuals with Huntington's disease.

The studies showed that in caregivers reporting caregiver strain:

  • Mortality risk was higher. These individuals were at 63% higher risk of dying than non-caregivers, or those caregivers who did not report caregiver strain. Each occurred whether the disabled person was cared for in the home or a long-term care facility.
  • Psychiatric health risk was higher in levels of depression, anxiety, exhaustion and sleep disorders.
  • Physical health risk was higher, which correlated with less exercise, fewer of their own preventative health exams, less healthy diet, more obesity or weight loss, and misuse of alcohol and prescription drugs.
  • Pain was frequent.

Though all studies are in agreement that caregiver stress is a frequent problem, several later studies involving more participants suggest that caregiving is not correlated with earlier mortality risk [Roth DL 2013, Ramsay S 2013].

Whatever the mortality risks, decreasing caregiver stress is vital. Key elements for improving caregiver health and stress include programs that:

  • Save caregiver's time, such as education and community programs that come to the caregiver
  • Give respite relief from caregiving for any period of time
  • Value the caregiver role
  • Reduce level of caregiver stress

Author's Comments: A couple of examples from my experience:

  • Pursue an activity that brings fulfillment outside of the caregiver role. A woman I know redesigned her home, bringing beauty into her life one wall and one floor at a time -- while caring for her husband.
  • Find or create a support group in person or on-line. It helps us all when we realize we aren't alone. There are about 50 million people in the U.S. providing care to midlife and older adults.
  • Ask for specific help, then accept it. Family, friends, neighbors, fellow churchgoers, etc. often want to help but don't know how. I've seen this make a very big difference.
  • Take some time off. A man who cared for his wife lifelong took a two week fishing trip with old friends every year. He returned with new energy and ability to provide care.
  • Exercise, meditate, do yoga. A woman who cared for her husband lifelong made a point of doing one of these things everyday.

There is no easy or total solution, but studies show that lessening the burden even a small amount can significantly improve caregiver strain [Adelman RD 2014]. Taking some time to care for yourself is vital. Just a little time helps a lot.

References

Schulz R, Beach SR. Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. JAMA. 1999 Dec 15;282(23):2215-9. PubMed abstract

Roth DL, Haley WE, Hovater M, Perkins M, Wadley VG, Judd S. Family caregiving and all-cause mortality: findings from a population-based propensity-matched analysis. Am J Epidemiol. 2013 Nov 15;178(10):1571-8. doi: 10.1093/aje/kwt225. Epub 2013 Oct 3. PubMed abstract

Ramsay S, Grundy E, O'Reilly D. The relationship between informal caregiving and mortality: an analysis using the ONS Longitudinal Study of England and Wales. J Epidemiol Community Health. 2013 Aug;67(8):655-60. doi: 10.1136/jech-2012-202237. Epub 2013 Jun 4. PubMed abstract

Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS. Caregiver burden: a clinical review. JAMA. 2014 Mar 12;311(10):1052-60. doi: 10.1001/jama.2014.304. PubMed abstract