Why personal support workers should be included in dementia care conversations.
Everyone working within the dementia care community has a common goal of providing the best quality of care possible to people living with dementia. How that care is provided may differ from organization to organization. And, while nurses, doctors and academics often share a variety of perspectives on what constitutes the best care possible in various articles and studies, one group of stakeholders that often gets less say when it comes to their point of view are personal support workers (PSWs).
PSWs work directly with people with dementia and are usually the front line of care in both private homes and long-term care facilities. In most cases, PSWs have less training and credentials than other members of a care team, which means their opinions are often regarded with less gravity than that of a doctor or nurse, even though they tend to spend more one-on-one time with people with dementia than any other professional caregivers.
This is why Dr. Marie Savundranayagam and her colleagues at Western University’s CARE Lab and the Sam Katz Community Health and Aging Research Unit wanted to study the perspectives of PSWs when it comes to providing high-quality care to clients with dementia.
Marie Savundranayagam, PhD
In December 2021, Savundranayagam and her team published a paper titled, “Quality home care for persons living with dementia: Personal support workers’ perspectives in Ontario, Canada,” in the journal Health and Social Care in the Community. The paper reported on the experiences of 15 Ontario-based PSWs who were interviewed by the research group over a few months in late 2019 and early 2020.
“We asked the open-ended question, ‘What does quality of care for persons living with dementia look like to you?’ We really wanted to understand their perception of quality of care,” Savundranayagam says. “Through that interview process we identified several themes that emerged related to what quality of care means to people on the front line.”
Many of those themes that Savundranayagam uncovered echo the documented concerns of other dementia care workers. Specifically, the PSWs pointed to the importance of individually tailored person-centred care, a common call in the current thinking about dementia care.
Photo courtesy of Canva.
The day-to-day aspect of the PSW role puts the participants in intimate proximity to the people that they’re caring for, and that closeness led to some more specific comments as well. The study found that PSWs believe that a consistency of care and the pairing of clients with the same PSWs on a regular basis are both important for high-quality care, and they also recommend that family care partners be given more formal support in navigating the care system.
Those interviewed also offered some insight on aspects that could help them to better perform their jobs and contribute to that overall picture of person-centred care. Savundranayagam says that many of the participants stated that, in general, PSWs aren’t provided with proper training or access to new cutting-edge information in the same way that a doctor or registered nurse would be. They also often don’t feel respected as part of a client’s larger support team. In some cases, some of the participants said they aren’t even briefed on a client’s full history or other information that could be essential in providing the very best care.
"PSWs spend the most time with their clients living with dementia and need to be actively involved in those interprofessional care teams."
–Marie Savundranayagam, PhD
“PSWs really want to be included as part of the interprofessional care team,” Savundranayagam says. “They’re working with family care partners, nurses and doctors and they want to be included so that everybody's on the same page. PSWs spend the most time with their clients living with dementia and need to be actively involved in those interprofessional care teams.”
As one PSW who participated in the study put it: “The LHIN [Local Health Integration Network] come in, they do their assessment, they leave. They don't see the changes. They’re not with person every day or every week. The only person that’s going to see that is the family members and the PSW. So, ideally, the care plan should involve everybody.”
Finally, the respondents asked for a call to action for agencies to better respect and support PSWs so that they have the time and ability to treat clients with an equal degree of dignity and respect. In this regard, PSWs who work independently rather than with an agency said that being able to facilitate their own schedule rather than rushing from assignment to assignment allows them to give each client the attention they deserve.
"Our paper really is about including the people who are doing the most work and are providing the most care but get the least support."
–Marie Savundranayagam, PhD
Savundranayagam says she hopes that other health-care workers take the PSWs’ concerns to heart and work to make them feel included and heard. With everyone having the same goal — providing excellent treatment for those with dementia — it makes sense to put real value in the voices of those interacting directly with those with dementia.
“Advocating to be part of an interprofessional team is a fair ask because PSWs have frequent contact with clients with dementia and therefore are the ones who can see the changes that the person with dementia may be experiencing,” Savundranayagam says.
“Our paper really is about including the people who are doing the most work and are providing the most care but get the least support. Part of our research is to advocate for PSWs because, apart from family care providers, they are the backbone of the formal care system.”