Getting a head start! Are there benefits to implementing early-stage strategies for caregivers of people with cognitive impairments?

The Bottom Line

  • Millions of people live with dementia or mild cognitive impairment (MCI) across the globe, many of which require support from a caregiver.
  • Caregivers of people with dementia or MCI can experience negative impacts on everything from their psychological to social health.  
  • Early-stage strategies may improve well-being and the ability to provide care for caregivers of people living with mild dementia or MCI.
  • If you are a caregiver for a person living with mild dementia or MCI, consider discussing early-stage strategies with your healthcare team. 

Globally, more than 55 million people live with dementia—of which over 600,000 are in Canada (1;2). Additionally, around 12-18% of adults over 60 live with mild cognitive impairment (MCI) (3). Dementia impacts memory, thinking, and if or how a person is able to perform daily activities (4). MCI, on the other hand, is early-stage memory and/or cognitive ability loss. Given that it is early-stage, people with MCI can still perform most activities of daily living on their own. MCI sometimes leads to dementia, but this is not the case for everyone (2).


For people living with dementia, and at times MCI, informal caregivers are often needed. In Canada, it is estimated that caregivers of people living with dementia spend an average of 26 hours a week providing care (1).


Caregiving can be a positive and fulfilling experience, but can also bring with it many challenges. Stress, burden, loneliness, depression, and anxiety are just some of the impacts that caregivers of people living with dementia or MCI may face (1;3-5). Research has identified that while caregivers are sometimes hesitant to request or get support when their loved one is first diagnosed with dementia or MCI, later upon reflection, they recognize the value of and need for that support, in everything from education on the condition to where to access community resources (3; 6-10). And not only do they want it, but they want it early on before experiencing challenges related to caring for someone with dementia (3;7). Unfortunately, research on early-stage strategies, meaning those implemented when cognitive impairments are still mild, is limited.


In response, a systematic review looked at whether early-stage strategies positively impact well-being and the ability to provide care in caregivers of people living with mild dementia or MCI. Here, early-stage strategies included counseling/psychotherapy, psychoeducation (e.g., education on caregiving/dementia and applying the education learned), and a combination of strategies, such as both counseling and psychoeducation. These strategies were compared with usual care (such as low-frequency counselling, conventional home care programs, and welfare services), receiving strategies at a later time, or receiving different types of strategies (such as education or general information and basic counselling at time of diagnosis) (3).


What the research tells us

The review found that early-stage strategies may have a positive, but small, impact on well-being and the ability to provide care in the short-term in caregivers of people living with mild dementia or MCI. These impacts are especially evident for anxiety and distress. All the strategies appear to have similar impacts, with no one being better than the other. But strategies that are focused only on the caregiver may be more effective than those targeted at both caregivers and the person they are caring for. That said, only a limited number of good quality randomized controlled trials are available on early-stage strategies, and therefore more research is needed (3).


If you are a caregiver for a person diagnosed with mild dementia or MCI, consider seeking support sooner rather than later. Sources of support can include your healthcare team or connecting with the Alzheimer Society of Canada for assistance in finding information and community programming that is accessible and right for you.


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References

  1. World Health Organization. Dementia. [Internet] 2023. [cited July 2023]. Available from https://www.who.int/news-room/fact-sheets/detail/dementia
  2. Alzheimer Society of Canada. Navigating the path forward for dementia in Canada: The landmark study report #1. [Internet]. 2022. [cited Aug 2023]. Available from https://alzheimer.ca/en/research/reports-dementia/landmark-study-report-1-path-forward
  3. Alzheimer’s Association. Mild cognitive impairment (MCI). [Internet] 2022. [Cited Aug 2023]. Available from  https://www.alz.org/alzheimers-dementia/what-is-dementia/related_conditions/mild-cognitive-impairment/
  4. Bayly M, Morgan D, Elliot V, et al. Does early-stage intervention improve caregiver well-being or their ability to provide care to persons with mild dementia or mild cognitive impairment? A systematic review and meta-analysis. Psychol Aging. 2021; 36(7):834-854. doi: 10.1037/pag0000642. 
  5. Cooper C, Balamurali TBS, Livingston G. A systematic review of the prevalence and covariates of anxiety in caregivers of peoplewith dementia. Int Psychogeriatr. 2007; 19(2):175-195. doi: 10.1017/S1041610206004297.
  6. Papastavrou E, Kalokerinou A, Papacostas SS, et al. Caring for a relative with dementia: Family caregiver burden. J Adv Nurs. 2007; 58(5):446-457. doi: 10.1111/j.1365-2648.2007.04250.x.
  7. Boots LMM, Wolfs CAG, Verhey FRJ, et al. Qualitative study on needs and wishes of early-stage dementia caregivers: The paradox between needing and accepting help. Int Psychogeriatr. 2015; 27(6):927-936. doi: 10.1017/S1041610214002804.
  8. Wald C, Fahy M, Walker Z, et al. What to tell dementia caregivers—The rule of threes. Int J Geriatr Psychiatry. 2003; 18(4):313-317. doi: 10.1002/gps.828.
  9. Boots LM, de Vugt ME, Withagen HE, et al. Development and initial evaluation of the web-based self-management program “Partner in Balance” for family care givers of people with early-stage dementia: An exploratory mixed-methods study. JMIR Res Protoc. 2016; 5(1):e33. doi: 10.2196/resprot.5142.
  10. Lee K, Puga F, Pickering CE, et al. Transitioning into the caregiver role following a diagnosis of Alzheimer’s disease or related dementia: A scoping review. Int J Nurs Stud. 2019; 96:119-131. doi: 10.1016/j.ijnurstu.2019.02.007.

DISCLAIMER: These summaries are provided for informational purposes only. They are not a substitute for advice from your own health care professional. The summaries may be reproduced for not-for-profit educational purposes only. Any other uses must be approved by the McMaster Optimal Aging Portal (info@mcmasteroptimalaging.org).

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