Still here! Don’t let a dementia diagnosis keep you out of the conversation

The Bottom Line

  • After a dementia diagnosis, it’s important for those diagnosed to stay part of the conversation and speak up to make sure healthcare decisions fit their capabilities and preferences. 
  • Family members and caregivers often feel the need to step in to perform tasks and make decisions on behalf of loved ones with dementia. 
  • Caregivers of people with dementia should work with health care professionals and advocate for “person-centred care” that helps their loved one stay engaged in healthcare discussions and decisions for as long as possible.

Dementia is so prevalent that chances are if you don’t already have or care for someone who has the condition, you know someone who does. At least 47 million people are currently living with some degree of dementia worldwide, with close to 10 million new cases every year (1), most of them caused by diseases such as Alzheimer’s (2). The reality is that for many of us, it is just a matter of time before we – or someone close to us – shows signs and symptoms of dementia, including memory loss and/or difficulties with thinking, problem solving or language.

One of the most distressing aspects of dementia is losing the ability to reason and communicate, and therefore no longer able to care for ourselves and make our own decisions. Family members and caregivers, may feel the need to step in to perform tasks and make decisions on behalf of loved ones with dementia.

But a person living with dementia is still living! Dementia is a progressive condition that affects everyone differently as they move through the various stages at their own pace (2). Many people can maintain much independence and autonomy after diagnosis, including being involved in decision-making about their own health and well-being (3). This means there are strategies that people diagnosed with dementia can use to improve their own health, and approaches that caregivers and healthcare providers can use to assist in the provision of better care.

What the research tells us

Staying engaged is important! A dementia diagnosis should not exclude someone from the conversation. In fact, the research evidence shows that people with dementia have the ability to learn and retain new information when it’s presented in a way they can understand (4). A person with dementia will enjoy better health and a better quality of life if they’re involved in their own care and when their needs and wishes are understood by those helping them (5;6).

For example, risk of falling is greater for people with dementia (7). Studies show falls are most likely to be prevented if the individuals themselves and their caregivers weigh in on falls prevention strategies, including their personal preferences and capabilities (8).

Speaking up, sharing stories and socializing can also help ward off social isolation and depression (9) – common issues for many people after a dementia diagnosis.

Of course, it goes both ways. Declining cognitive abilities mean that caregivers and healthcare providers need to adapt too and adopt strategies that meet the changing needs of those with dementia. For example a “person-centred” care model, which emphasizes the needs, preferences, abilities and values of the individual, has proven to help reduce agitation in people with dementia (10), relieve stress and burnout for caregivers (11) , and increase family members’ confidence that they’re making appropriate decisions on behalf of their loved one (6).

Individuals diagnosed with dementia shouldn’t give up and should advocate for themselves as part of the conversation! There are supports and strategies that can help those diagnosed as well as their caregivers, family members and healthcare professionals prepare for the changes to come (2) while allowing the individual to continue living a full, active and independent lifestyle for as long as possible.

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  1. World Health Organization. Media centre: Dementia fact sheet. [Internet] 2017. [cited September 2017]. Available from
  2. Health Link BC. Dementia: Topic overview. [Internet] 2016. [cited September 2017].
  3. Hegde S, Ellajoysula R. Capacity issues and decision-making in dementia. Ann Indian Acad Neurol. 2016; 19(Suppl 1):S34-S39. doi: 10.4103/0972-2327.192890.
  4. Small JA. A new frontier in spaced retrieval memory training for persons with Alzheimer’s disease. Neuropsychol Rehabil. 2012; 22(3):329-361. doi: 10.1080/09602011.2011.640468.
  5. Moore TF, Hollett J. Giving voice to persons living with dementia: The researcher’s opportunities and challenges. Nurs Sci Q. 2003; 16(2):163-167.
  6. Petriwskyj A, Parker D, Robinson et al. Family involvement in decision making for people with dementia in residential aged care: A systematic review of quantitative literature. Int J Evid Based Healthc. 2014; 12(2):64-86. doi: 10.1097/XEB.0000000000000003. 
  7. Chan WC, Yeung JW, Wong CS, et al. Efficacy of physical exercise in preventing falls in older adults with aognitive impairment: A systematic review and meta-analysis. J Am Med Dir Assoc. 2015; 16(2):149-154. doi: 10.1016/j.jamda.2014.08.007. 
  8. Meyer C, Hill S, Dow B, et al. Translating falls prevention knowledge to community-dwelling older PLWD: A mixed-method systematic review. Gerontologist. 2015; 55(4):560-574. doi: 10.1093/geront/gnt127.  
  9. Franck K, Molyneux N, Parkinson L. Systematic review of interventions addressing social isolation and depression in aged care clients. Qual Life Res. 2016; 25(6):1395-1407. doi: 10.1007/s11136-015-1197-y. 
  10. Livingston G, Kelly L, Lewis-Holmes E, et al. Non-pharmacological interventions for agitation in dementia: Systematic review of randomized controlled trials. Br J Psychiatry. 2014; 205(6):436-442. doi: 10.1192/bjp.bp.113.141119. 
  11. Barbosa A, Sousa L, Nolan M, et al. Effects of person-centered care approaches to dementia care on staff: A systematic review. Am J Alzheimers Dis Other Demen. 2015; 30(8):713-722. 

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