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Dementia caregiving: Take care of yourself while caring for others

The Bottom Line

  • Family caregivers of people with dementia can experience distress or depression, often causing their own health to decline.
  • Strategies combining multiple components to support caregivers might be a good way to reduce their burden and depression, as well as improve their health and social life.
  • Education, skills training, counselling, support, and stress and mood management appear to be most often included in successful multicomponent approaches.  

The job of a caregiver to someone with dementia can be an emotional rollercoaster — especially when it falls on the shoulders of a family member such as a spouse or child (1;2). Family caregivers must tirelessly adapt to ever-changing — and often emotionally charged — situations, all while watching their loved one’s mind and personality disappear into a fog (3). Although rewarding, the job can take a mental and physical toll.

In Canada alone, more than 402, 000 people 65 years and older live with dementia (1). Dementia can rob a person of their memory, thinking, and social abilities, leading to difficulty communicating, confusion, personality changes, depression, and agitation (3).

Caring for someone with dementia can be time-consuming and costly. Unpaid caregivers spend an average of 74 hours a week providing care, and up to $4,600 per year on the person they are caring for (1). But the cost of caregiving goes well beyond time and money. Family caregivers will often put their loved one’s needs ahead of their own, at the expense of their own health and well-being (4). They may become cut off from their social supports (6;7), spend less time with friends, or engage in stressful disagreements about the person they are caring for (5;7). This translates into 45% of family caregivers experiencing distress (2), and 39% experiencing depression (5). Depression and burden, in combination with declining social support and health in caregivers, can then lead to the person in care being more likely to end up in an assisted living facility (5;8).

To overcome these challenges, dementia caregivers need effective support. Past studies have focused on single component strategies to help family caregivers cope. But how about strategies that combine multiple components? Can they help ease caregiver burden? New research has explored this question (5).

What the research tells us

A recent systematic review and meta analysis looked at the effectiveness of combining multiple components aimed at supporting informal family caregivers of people with dementia who live with their care recipient. These components included education and skills training, counselling, support groups, stress management, exercise and health promotion, telephone support, role play, and environmental modification.

Two specific programs were assessed in multiple studies: the New York University Alzheimer’s Disease Research Center (NYU-ADRC) psychosocial program, and the Resources for Enhancing Alzheimer’s Caregiver Health (REACH) II program. NYU-ADRC provides caregivers with six individual and family counselling sessions over four months, and ongoing support groups and phone counselling. REACH II includes a combination of education, support, role play, stress management, engagement in pleasant activities, phone support, and skills training.

The review found that in comparison to single component strategies, usual care, or nothing, multicomponent strategies can reduce burden and depression, and improve health and social support in caregivers. It also appears that the NYU-ADRC program may reduce depression, potentially for up to five years; while the REACH II program may positively impact depression and overall health.

Unfortunately, the review did not determine which combination of components works best, but education, skills training, counselling, support, and stress, and mood management were most often included in successful strategies (5).

The emotional and physical demands of caring for a loved one with dementia are enormous. Fortunately, there are multicomponent strategies that can be used to support family caregivers, allowing them to care for themselves while continuing to care for their loved ones.

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References

  1. Public Health Agency of Canada. Dementia in Canada, including Alzheimer’s Disease. [Internet] 2017. [cited September 2018]. Available from https://infobase.phac-aspc.gc.ca/datalab/dementia-alzheimers-blog-en.html
  2. Canadian Institute for Health Information. Unpaid caregiver challenges and supports. [Internet] 2018. [cited September 2018]. Available from https://www.cihi.ca/en/dementia-in-canada/unpaid-caregiver-challenges-and-supports#wait 
  3. Mayo Clinic. Dementia. [Internet] 2017. [cited September 2018]. Available from https://www.mayoclinic.org/diseases-conditions/dementia/symptoms-causes/syc-20352013 
  4. Elliott AF, Burgio LD, DeCoster J. Enhancing caregiver health: Findings from the resources for enhancing Alzheimer’s caregiver health II intervention. J Am Geriatri Soc. 2010; 58(1):30. doi: 10.1111/j.1532-5415.2009.02631.x. 
  5. Abrahams R, Liu KPY, Bissett M, et al. Effectiveness of interventions for co-residing family caregivers of people with dementia: Systematic review and meta-analysis. Aust Occup Ther J. 2018; 65(3):208-224. doi: 10.1111/1440-1630.  
  6. Xio LD, Wang J, He, G-P, et al. Family caregiver challenges in dementia care in Australia and China: A critical perspective. BMC Geriatr. 2014; 14:6. doi: 10.1186/1471-2318-14-6. 
  7. Etters L, Goodall D, Harrison BE. Caregiver burden among dementia patient caregivers: A review of the literature. J Am Acad Nurs Pract. 2008; 20(8):423-428. doi: 10.1111/j.1745-7599.2008.00342.x. 
  8. Gaugler JE, Kane RL, Kane RA, et al. Unmet care needs and key outcomes in dementia. J Am Geriatr Soc. 2005; 53(12):2098–2105. doi: 10.1111/j.1532-5415.2005.00495.x. 

DISCLAIMER: The blogs are provided for informational purposes only. They are not a substitute for advice from your own healthcare professionals.

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