Did you know that nursing homes (and other similar facilities) are not only caring for frail older people in the last phase of life? In fact, nursing homes often have "young" residents between the ages of 18 and 64. For a variety of health reasons, these people can no longer live in their own homes because their safety is at stake and their health needs exceed the services offered at home. In Canada, this clientele represents approximately 7% of residents in nursing homes.
However, because the vast majority of nursing home residents are at least 75 years old and the average age of admission is 83, care and activities are designed to meet the physical and psychological needs of seniors, not adults under 65.
Who are these young residents and how do we optimize their quality of life?
What the research tells us
A recent systematic review identified 13 studies on the lived experiences, needs and quality of life of residents under the age of 65 in nursing homes.(1) In all studies, participants were predominantly white men with limited family support.
Reasons for admission of adults under the age of 65 to nursing homes include brain injuries from car accidents or violent trauma, multiple sclerosis, physical disabilities, intellectual and developmental disabilities, cerebral palsy, Huntington's disease, psychiatric disorders, and morbid obesity.
There are five areas of concerns regarding the lived experiences of young residents:
1. Feeling like prisoners
Young residents often feel trapped because they could not move freely in and out of the facility. They felt that they were not included in making decisions that affected them, such as what to eat, when to eat, or what social activities to do.
2. Lack of socialization
Social activities offered in nursing homes are not adapted to their age or interests, which exacerbate their feelings of boredom and loneliness. To counteract this sense of emptiness, young residents would like to socialize with people their own age who live in the same facility, meet people from the community, and maintain more frequent meaningful family connections.
3. Lack of privacy
Sharing a bathroom or not having a door that locks is problematic for young residents, who would like more privacy for personal hygiene and to experience intimate relationships.
4. A living environment that foster anxiety
It is difficult for these young residents to live with seniors who may have dementia, who may be very frail, or who may be at the end of life. Being confronted with the physical and cognitive decline of other older residents, as well as the end of life, this living environment can foster anxiety among young residents.
5. Loss of identity
Younger residents in nursing homes are becoming patients, losing their sense of belonging, their personality and their autonomy. They can no longer be with their loved ones as they once were. In fact, nearly one in three young residents say that contact with their children is limited and that their social relationships have deteriorated since they began living in these facilities.
Quality of life, regardless of age
The criteria young residents use to define quality of life are similar to those of older residents: having privacy, autonomy, maintaining their identity, socializing, feeling at home.
At a time when we are trying to improve nursing homes, and even to find alternatives to such facilities,(2) it seems appropriate to pay attention to these young residents in order to improve their quality of life and help them live with dignity.
In fact, many of them are making their voices heard in order to improve their quality of life and that of their peers.(3) Among their requests, there is often mention of their preference for a living environment that is neither a hospital nor a nursing home, but rather something in between. Such care settings would specialize in the needs of younger residents, with staff trained in complex and acute medical diagnoses.