People with dementia have bodies too
Dementia is on the rise in Australia’s ageing population and numbers are expected to double by the middle of the century. Physiotherapy should be an essential part of care for these vulnerable patients, but many physiotherapists lack knowledge and confidence when working with people living with dementia.
Dementia is the third-leading cause of disease burden in Australia (Australian Institute of Health and Welfare 2021).
There are around 487,500 people living with dementia in 2022 and this is expected to rise to an estimated 1.1 million by 2058 (Dementia Australia 2022).
Across Australia, more than half of the people living in residential aged care have dementia and many more are cared for at home by family members.
While not all people with dementia are older, one in 12 Australians over the age of 65 has dementia and this rises to two in five over the age of 90 (Australian Institute of Health and Welfare 2021).
As increasing numbers of older Australians receive diagnoses of dementia, physiotherapists are more likely to find themselves treating people who live with dementia.
However, many physiotherapists have not had exposure to working with this patient cohort and find it challenging.
Dementia is an umbrella term referring to a number of different neurological conditions in which the brain suffers a gradual and global loss of function.
The more common types of dementia include Alzheimer’s disease, vascular dementia, dementia with Lewy bodies and frontotemporal dementia, but there are other kinds associated with chronic conditions such as Parkinson’s disease and with brain injuries from stroke, trauma and more.
Different types of dementia can affect the brain in different ways and quite often people have symptoms of more than one type of dementia.
The most important thing to know about dementia, says Associate Professor Michele Callisaya APAM, a researcher at Monash University’s Peninsula Clinical School, is that the cognitive changes that define the condition are a symptom, not the whole disease, although they are often treated that way.
Less commonly known is that along with the cognitive changes that define dementia, many people with dementia also show physical changes.
In fact, some dementia researchers believe that subtle declines in physical ability may even precede the appearance of cognitive symptoms like memory problems, says Dr Kate Lawler APAM, a physiotherapist and researcher at the Wicking Dementia Research and Education Centre in Tasmania.
‘Usually, it’s the memory and thinking that trigger someone to go and see a doctor because “Oh my gosh, maybe I’m getting dementia”.
'But actually, it appears that years before people hit that time where their thinking is affected, there might be some subtle changes in movement.
'And obviously, for a physio, movement is of high interest,’ Kate says.
At the Wicking Dementia Research and Education Centre, Kate works in the cognitive clinic, looking at the physical characteristics of dementia.
She says it’s rare for physiotherapists to work in cognitive clinics (or, as they are sometimes called, memory clinics), although she believes physiotherapists may have a role there.
‘I do some of the assessments that physios would do in clinical practice to assess things like gait, grip strength and balance for people who are potentially looking at a dementia diagnosis,’ she says.
Kate Lawler is investigating the physical characteristics of dementia. Subtle declines in physical ability may precede cognitive symptoms.
Gait changes—such as shortened step length and the shuffling seen in patients with Parkinson’s disease or dementia with Lewy bodies—strength and balance problems are commonly found in people with dementia as the disease progresses.
Kate says that some mobility problems are caused or worsened by problems with processing the surrounding environment.
People with dementia may also lose the ability to do multiple things at once, such as walking and carrying a cup of tea or even walking and talking, which further complicates things.
‘I always describe it to patients as, “Some of what we will do today is standard clinical practice, and some is to help us understand more about how movement and thinking may be related,”’ she says.
Kate works with Associate Professor Jane Alty, a neurologist and researcher, applying artificial intelligence to movement analysis to identify subtle movement changes that might appear years before cognitive changes are observed.
‘We’re doing things like videoing hand movements and looking at whether there are any subtle changes, using machine learning and exciting things that our IT colleagues really drive, which might contribute to what we do as physios in the future in terms of recognising dementia risk earlier,’ Kate says.
Michele agrees that physical decline goes hand in hand with cognitive decline in aged populations.
Her postdoctoral research looked at the different cognitive domains and how they relate to mobility and falls.
‘The evidence shows that up to 10 years before someone gets diagnosed with dementia, or even in that mild cognitive impairment stage, mobility is poorer, particularly in terms of the non-Alzheimer’s type of dementia.
'In some of my research, we’ve looked at different areas of the brain and the type of structural changes that occur and at how they overlap with both mobility and some of those cognitive functions.
'The location in the brain where we see more atrophy is often the prefrontal area and that’s related to both executive function and mobility.
'So you’ve got similar underlying areas of the brain that might be affected, but we also know that people who are diagnosed with dementia become more socially withdrawn; they stop doing their activities,’ says Michele.
The last point is important, Michele says, because physical inactivity is a known risk factor for the development of dementia.
Conversely, remaining physically active can have a neuroprotective effect on the brain.
Two recent systematic reviews published in Journal of Physiotherapy have also shown that exercise can slow down cognitive decline in people with dementia and other cognitive impairments (Law et al 2020, Lam et al 2018), further bolstering the need for older people to remain physically active for as long as possible.
Kate says a key role for physiotherapists is to encourage physical activity in people of all ages in order to promote brain health.
For people with dementia, it is important to maintain physical activity for as long as possible, so they can continue doing the things they enjoy, whether that is playing golf or pottering around the garden.
‘Physios pretty much across the board, not just people who might identify as gerontological physios or neuro physios but all of us who interact with the public, have an opportunity to contribute to prevention and risk reduction for dementia,’ Kate says.
Physiotherapists also have a role to play in the post-diagnostic care of people with dementia.
Sadly, there is a stigma attached to the diagnosis that has a great impact on the healthcare that people receive or, in many cases, don’t receive.
A recent study by Michele and Kate demonstrated that people living with dementia who had a stroke were significantly less likely to be treated in a stroke unit, to be offered physiotherapy or occupational therapy or even to be offered rehabilitation services (Callisaya et al 2021).
Kate says it is not uncommon for people with dementia to be denied opportunities for rehabilitation once it’s known that they have been diagnosed with dementia.
‘People with dementia have bodies.
'And actually, the whole spectrum of what we do for people as physios might also benefit someone living with dementia.
Michele Callisaya's research looks at structural changes in areas of the brain where mobility and cognitive functions overlap.
'It’s really important, particularly because sometimes people with dementia get labelled as not being able to participate in therapy or things like that; they often can’t access just basic rehab after a stroke or care if they have arthritis or back pain or all those other things that we treat as physios.
'I think it’s important to recognise that people living with dementia also need those kinds of treatments,’ Kate says.
‘Similarly, people living with dementia are often labelled in healthcare and aged care settings as “difficult” or “aggressive”.
'And that can be very real but as physios, we also have a role in trying to get to the bottom of what’s happening.
'Because dementia doesn’t necessarily make someone aggressive, but it can impair someone’s ability to communicate.’
Kate says that, for example, a person with dementia who is in hospital or in residential aged care may not be able to communicate with the nurses and other staff about pain and discomfort and may lash out physically if someone tries to move them too quickly or without explanation.
‘Someone without cognitive impairment might be able to say, “Oh, watch out, I’ve got a really sore hip.”
'But someone at a certain stage of dementia might not be able to communicate that and, instead, they become this aggressive person.
'As physios we have an opportunity to understand that sometimes these sorts of behaviours might be an expression of unmet need.
'By understanding as much as we can about a person, and recognising that there might be ways we could contribute if pain is an issue, we could actually help make that better rather than just saying, “Oh, that aggressive person can’t have access to therapy anymore,”’ says Kate.
A big issue, say both Kate and Michele, is that often physios, as well as other allied health clinicians, may not have much exposure to patients with dementia during their training and early years of working.
One of Michele’s PhD students, Stephen Quick, is exploring the perceptions, attitudes and beliefs held by physiotherapists working with people with dementia as well as the challenges they pose for both newly graduated and experienced physiotherapists (Quick et al, in press).
‘They struggle with the communication with someone with dementia, the behavioural symptoms, the diversity of the presentation and people’s psychological changes that go along with dementia, like apathy or depression.
'Of course all those cognitive changes mean that delivering intervention can be really difficult,’ Michele says.
The perception that patients with dementia can’t improve and can’t engage with treatment and rehabilitation is also pervasive, Michele says.
It’s something that she believes needs to be addressed through training, both for students and for practising physiotherapists.
‘I think we need to do a lot better in terms of practicals and making sure that students and early career physiotherapists get some exposure.
'A lot of these strategies don’t just benefit people with dementia, but also people with traumatic brain injuries and more.
'You need to be creative; you need to really get to know the person; you need to have a toolkit of strategies,’ she says.
There are many things physiotherapists can do to help people with dementia and the underlying principle is to treat the patient as a person rather than a diagnosis.
Both Kate and Michele are involved with the ReseArch and PractIce in Dementia (RAPID) Physiotherapists Network, including an international modified e-Delphi-style research project chaired by Michele and researcher Dr Morag Taylor at the University of New South Wales, which aims to define the core competencies needed by physiotherapists working with patients living with dementia.
How to work with a person with dementia
Kate and Michele say there is a lot physiotherapists can do to improve the way they work with people with dementia.
- Have a good understanding of the types of dementia and how they may present—this can give physiotherapists a solid foundation for working with patients who live with dementia. ‘Have an understanding before you go in of the type of dementia, the symptoms and the cognitive impairments that the person has and think about that, because to some extent that’s going to help you pre-plan the strategies that you might use,’ says Michele.
- Take the time to get to know the person and their carers. Kate notes that it can be difficult in a hospital setting to involve family members, but it’s an important part of engaging with the patient and they may be able to help the patient with exercises and physical activity. ‘Having their families or important people in their life present can make a big difference in terms of how safe the person feels, particularly if they are more impaired. If they are struggling with just navigating the actual environment, having a carer there can be really good. But they can also offer information. “Oh, he doesn’t like it when…” or “This sort of thing can be really upsetting” or “He gets a bit triggered by whatever”,’ Kate says. ‘If you’re going to try to work with this person, don’t jump straight in—get to know them first, what they like and don’t like. It’s about talking to the family and finding out what their routines are. If they’re in residential care or hospital, then you might talk to the staff,’ says Michele.
- Slow down to their speed and don’t ask them to do too much at once. ‘One of the things that’s really important is to approach the person slowly. If they’ve got slow processing speed, approach from the front, don’t come up from behind. Approach slowly and almost respond at the same speed as they’re responding to you,’ says Michele. ‘Make sure that you’re not overloading the person with too much information; give them simple instructions and time to respond.’
- Wait for them to answer you; they could be searching for words. ‘We sometimes assume that someone can’t respond but actually, because of disease processes, they might just be slower to respond. Hold back for a minute and just see if they can actually do that because they might surprise you. Sometimes, even someone who appears to be very impaired might simply be a little slower with their responses,’ says Kate.
- Provide a calm, uncluttered environment. Consider the treatment surroundings, says Kate. This means reducing the number of distractions and keeping things simple, making good use of light, employing solid, contrasting colours and avoiding highly patterned carpets and furnishings. ‘Hospital gyms can be really tricky, if there are lots of things going on, as can wards if you’re in a four-patient room. There’s beeping going on and other people talking. These things can be very challenging,’ she says.
- Don’t try to do too much. Instead, work on one thing in each session with your patient. ‘It’s important that you don’t vary the task in one treatment session. For example, rather than varying the height of the chair or using a different chair, stick to the chair that they’re going to get out of all the time. Of course, that doesn’t always work; some patients are going to get sick of doing that same thing for you. You have to be flexible and try to incorporate things that people enjoy,’ says Michele.
- Tailor treatment to help them where they most need it. For example, in the earlier stages of dementia, patients might need encouragement and education. In later stages, it might be about making the patient comfortable. ‘Early on, in particular, a reablement or rehabilitation approach is useful, working towards improving and maintaining mobility so that later on falls are less of a risk. We know that there’s an interaction between cognition and physical function, so potentially by improving physical function you are going to support the cognitive function. Physical activity has a neuroprotective effect as well. Exercise can potentially reduce some of the behavioural and psychological symptoms and there’s a need to assist people to maintain activities after a diagnosis of dementia. Whether that’s gardening or bowls, you can look at different aids that might help someone do that,’ Michele says. She explains that taking a multidisciplinary approach can be useful. For example, an occupational therapist can help by working with a patient to develop cognitive strategies to cope with their dementia symptoms. ‘It might be simple, like reminders or lists or setting out the steps of how to do something to help someone maintain their activities.’
Ultimately, it comes down to treating the patient as a person, not as a diagnosis, say both Michele and Kate.
‘The most essential thing,’ says Michele, ‘is good person-centred care.’
Law, C.-K., Lam, F.M.H., Chung, R.C.K., Pang, M.Y.C. ‘Physical exercise attenuates cognitive decline and reduces behavioural problems in people with mild cognitive impairment and dementia: a systematic review.’ Journal of Physiotherapy, Volume 66, Issue 1, 2020, 9–18. https://doi.org/10.1016/j.jphys.2019.11.014.
Lam, F.M.H., Huang, M.-Z., Liao, L.-R., Chung, R.C.K., Kwok, T.C.Y., Pang, M.Y.C. ‘Physical exercise improves strength, balance, mobility, and endurance in people with cognitive impairment and dementia: a systematic review.’ Journal of Physiotherapy, Volume 64, Issue 1, 2018, 4–15. https://doi.org/10.1016/j.jphys.2017.12.001.
Callisaya, M.L., Purvis, T., Lawler, K., Brodtmann, A., Cadilhac, D.A., Kilkenny, M.F. ‘Dementia is Associated With Poorer Quality of Care and Outcomes After Stroke: An Observational Study,’ The Journals of Gerontology: Series A, Volume 76, Issue 5, May 2021, 851–858. https://doi.org/10.1093/gerona/glaa139
Quick, S. M., Snowdon, D. A., Lawler, K., McGinley, J., Soh, S-E., & Callisaya, M. L. ‘Physical Therapist and Physical Therapist Student Knowledge, Confidence, Attitudes, and Beliefs about Providing Care for People Who Have Dementia: A Mixed-Methods Systematic Review.’ Physical Therapy, in press. https://doi.org/10.1093/ptj/pzac010
Australian Institute of Health and Welfare. ‘Dementia in Australia: 2021 Summary report.’ Australian Institute of Health and Welfare website, Australian Government, 2021, accessed 25 March 2022. doi:10.25816/9wa9-ts39
Dementia Australia. ‘Dementia Statistics.’ Dementia Australia website, 2022, accessed 25 March 2022. https://www.dementia.org.au/statistics
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