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The social exclusion of caregivers

On August 26, 2019

Interview with Hélène Carbonneau, Geriatrics-Gerontology, Recreation, and Leisure Studies researcher and professor in the Department of Leisure, Culture and Tourism Studies, UQTR


Being a caregiver is a responsibility. Whether your loved one lives at home or in a residential facility, you are often called to change – sometimes considerably – your plans. Fatigue, lack of time, but also guilt and concerns about the well-being of your loved one can relegate the time dedicated to your social activities to the back burner.

To counter isolation among caregivers, Hélène Carbonneau uses a pleasure-based approach. A simple initiative that provides psychological comfort to seniors and helps the social reintegration of caregivers by optimizing pleasant moments in their daily lives.

Several causes behind the isolation

  • Exhaustion. As their involvement develops, caregivers can sometimes be overwhelmed by their situation. In addition, in many cases, they do not identify themselves in this role and do not necessarily feel concerned about the support services offered.
  • Ambiguous loss. Neurocognitive disorders can affect the person's ability to maintain certain social and recreational activities, especially with their caregiver. For some caregivers, the loss of these shared pleasant moments is significant because it taints the fundamental bond of spouse, best friend, etc. that they had with their loved one. Gradually, both the caregiver and the person being cared for withdraw from social life.
  • Guilt feeling. Without necessarily experiencing a loss of shared activities, other caregivers may experience a significant sense of helplessness in no longer knowing how to generate pleasant moments for their loved one with cognitive problems. This can lead them to feel guilty if they continue their social activities and contribute - again - to their isolation.

Countering isolation with pleasure

With various professionals from the health and community networks, Ms. Carbonneau pleasure-based approach in different contextes. Their objectives? Integrate beneficial activities into the daily routine of a person with cognitive losses and foster the sentiment of competency in the caregiver, who chooses activities that make their loved one happy: “Our approach is based on pleasure. The caregiver chooses simple activities that they and their loved one can do together. The people helped may not remember it, but the most important thing is the emotion felt, not the memory,” explains Ms. Carbonneau.

Offered in community setting, this type of activity then becomes a leisure opportunity like any other: “The caregiver and their loved one participate do this activity adapted for them the same way as those who dance or paint. They are in a judgement-free setting, which will allow them to maintain meaningful social participation in their community,” continues Ms. Carbonneau.

Time for yourself, with complete peace of mind

Ms. Carbonneau and her team also train and guide home support workers in this approach: “Very often, caregivers who take a moment of respite are worried. Their loved ones must stay with home support workers who they do not know and who are not necessarily equipped to comfort them. We explain our pleasure-based approach to the professionals and the caregiver shows them what activities work with the loved one. This way, the caregiver can leave with peace of mind.”

For Ms. Carbonneau, leisure activity is central for the quality of life with Alzheimer’s disease and their caregivers, but more needs to be made to live well together. And the most effective solutio are not always the most complicated.