An estimated 50 million people worldwide are living with dementia, a number that is expected to triple to 152 million by 2050. In Canada alone, more than 402,000 people aged 65 and over are living with dementia.
In high-income countries, about half of all people with dementia are cared for in nursing homes. When these individuals require care that their caregivers and families can no longer provide, they are often placed into a nursing home.
This is not an easy decision. What happens after the placement into a nursing home? Caregivers and family members do not want to leave their loved ones behind. On the contrary, they want to be involved to ensure that they receive the best care. In addition, media reports of neglect or abuse have made families aware of what can sometimes go wrong when seniors are left alone. Fortunately, care facilities are increasingly recognizing the involvement of families and caregivers of people living with dementia. This is especially true in the context of a labour shortage where all help is welcome!
What the research tells us
A recent systematic review identified 33 articles representing 30 studies that examined family engagement after the placement of a loved one with dementia in a nursing home.(1)
The studies revealed that the majority of families wanted to work with staff as care partners. In addition, seven themes emerged about the type of engagement desired by families. Thus, families wish to:
1- collaborate with staff and develop an active partnership (which is based on trust and recognition of their respective roles);
2- visit and communicate freely with their loved one;
3- participate in the delivery of care (both physical and psychosocial care);
4- act as an advocate, spokesperson and guardian;
5- oversee and influence the delivery of care (for example, assisting with daily care or end-of-life care planning, sharing comprehensive information);
6- monitor care (for example, to ensure the well-being, respect and dignity of their loved one); and
7- evaluate the quality of care.
Families are more engaged when they feel that their presence and knowledge are encouraged by the staff, and that their expectations are taken into account. In addition, when families are confident in the care provided by the staff, they do not feel pressured to take on an increased role in monitoring the care or advocating for their loved ones.
If you are a family member who wish to be engaged in a nursing home, don't hesitate to meet with the care team and make your expectations clear. Discuss your role to avoid ambiguity. Keep the lines of communication open and respect the expertise of the staff who care about their patients.