Rehabilitation supports and enhances everyday functioning, meaning it could improve quality of life for individuals living with dementia. So why isn’t it more accessible?
Christine Thelker lives an active, independent life. She travels often and participates in Pilates classes several times a week. But every so often, her ankle gives her a little trouble. She has some difficulties with her balance and her coordination, too, which is common for individuals like her who live with vascular dementia.
Thelker, who lives in Vernon, B.C., knows that without rehabilitation to strengthen and balance her musculoskeletal system, these physical issues will only get worse. And if they do get worse, that would affect her ability to approach the everyday activities she loves, altering the life she leads.
Thelker was diagnosed with vascular dementia four years ago, but it’s only in the last two years that physiotherapy became a regular part of her health-care routine.
“When my doctor gave me the dementia diagnosis, I felt lost and isolated,” says Thelker. “There was no medical follow-up for me.”
It was only when she discovered Dementia Alliance International, a global support, education and advocacy group comprised of individuals living with dementia, that she learned rehabilitation services like physiotherapy were even an option for individuals living with dementia. And that chance discovery changed Thelker’s life.
Rehabilitation focuses on strategies that maintain or improve functional ability and independence through maximizing an individual’s capacity. Most likely all individuals will require rehabilitation at some point in their lives. Simply, rehabilitation is any form of care that enables an individual to keep up activities for everyday living.
What that means specifically differs from person to person: one person’s everyday can be vastly different from someone else’s, which is why rehabilitation therapy is such a broad form of health care. Physiotherapy, occupational therapy and speech therapy are just some forms of rehabilitation, yet all rehabilitation services will contribute to a person regaining or maintaining independence, recovering from a physical setback or improving their functioning in daily life.
Since beginning regular physiotherapy sessions two years ago, Thelker’s balance is better and her core is stronger, making daily activities like lifting laundry and carrying groceries easier and reducing her risk of falls. And, Thelker adds, she just feels better.
In Thelker’s case, rehabilitation therapy is a form of preventative medicine, lessening her risk of physical setbacks that aren’t directly related to her dementia, such as falling and breaking a bone. But rehabilitation can also be restorative, says Dr. Katherine McGilton, a senior scientist at the Toronto Rehabilitation Institute University Health Network. One area of her research focuses on the rehabilitation of older adults living with dementia after a hip fracture, and she has found evidence of the positive effects of inpatient rehabilitation for older adults with dementia.
A 2013 study McGilton worked on found that providing inpatient rehabilitation lowered the individual with dementia’s chance of being admitted to a long-term care facility after they were discharged from the rehabilitation facility.
“Our research found the more rehab, the better the [physical] recovery for individuals with dementia,” says McGilton. “Walking involves your procedural memory and some of our clients actually began walking sooner than clients who don’t have dementia. Clients without dementia are really worried about the pain and so don’t want to walk and begin rehab exercises.”
Despite these promising findings, neither preventative nor restorative rehabilitation therapies are widely accessible to individuals with dementia. Often that’s because rehabilitation isn’t positioned as an option at the time of a dementia diagnosis. McGilton’s research also highlights a lack of accessibility. In a 2016 study by her colleague Dr. Dallas Seitz, it was found that, of the 11,200 individuals with dementia who experienced a hip fracture, 40 per cent received no rehabilitation. And, of those who did, only 27 per cent received inpatient rehabilitation, the level of rehab shown to have the best outcomes for people living with dementia.
One of the biggest barriers at play is stigma, or the “why bother” attitude that exists.
“We actually make assumptions that someone is physically declining because of their dementia. And [health professionals] tend to keep people with dementia out of rehab because of their cognitive status,” says McGilton. “There’s the belief that because a patient with dementia won’t remember what they were taught yesterday that they can’t be rehabilitated. In truth, what we’ve found is your level of physical functioning prior to the fall, rather than your cognitive status, is an indicator of how well you will do in rehabilitation post-fracture.”
Another barrier is cost, particularly with preventative rehab. Christine Thelker recognizes that receiving rehabilitation therapy can be a financial struggle for many individuals with dementia, as the public health-care system doesn’t cover many of these therapies. In Canada, rehab therapies can cost between $75 and $150 per session without insurance coverage, making these therapies out of reach for some individuals without employment and private health insurance.
When it comes to inpatient rehabilitation, McGilton says that teaching health-care providers how to effectively rehab individuals with dementia does require experts like advance practice nurses to teach staff how to do it well so there is a cost. Yet, there are also long-term cost savings by making rehab more accessible.
“A health economist on my team looked at the cost savings of rehabilitation,” says McGilton. “The savings were between $20,000 to $30,000 per patient, per year, when we get older adults with dementia into a rehabilitation bed as opposed to going into long-term care.”
But, because there are so few inpatient rehabilitation beds in the Canadian health-care system, that “why bother” mentality means people with dementia are overlooked.
“There are not enough beds for the demand,” McGilton says. “It becomes an issue of how many beds do we need to meet the needs of this growing segment of the population and how do we improve access when we do.”
In June 2019, Christine Thelker travelled to New York to attend the 12th Conference of States Parties to the Convention on the Rights of Persons with Disabilities. She sat in a room full of United Nations representatives and spoke about living with dementia, why dementia should be recognized as disability, and the rights to which this group is entitled, including access to rehabilitation.
These days, Thelker continues to advocate for individuals with dementia to receive equal access to health care, including access to rehabilitation therapy. She says that rehabilitation should be offered as a standard part of treatment protocol, not because it will cure anyone’s dementia, but because it is ethical to provide health-care options.
“We don’t say ‘why bother’ to people with cancer because there is a risk their cancer could come back in five years. We don’t say, ‘We’re not sure if this drug trial will work, so we won’t try,’” says Thelker. “Why is it okay to approach people with dementia with that attitude?”
Thelker continues her rigorous rehabilitation regimen today. She knows she has to work hard to keep her body functioning well so she can continue to meet the demands of her day-to-day life on her own terms. And it’s an option she wants everyone with dementia to access.
“We need to help people with dementia be productive, functional, independent people for as long as possible,” says Thelker. “We need to help them live better.” [ ]