Encountering dementia with confidence
There is a growing need for increased awareness of dementia among physiotherapists and targeted clinical education. Joanna-lee Tan, Associate Professor Michele Callisaya, Stephen Quick, Cath Evans and Thomas Senyard offer a range of perspectives on this important topic.
People living with dementia can benefit greatly from participating in physiotherapy but there are a number of barriers to their accessing care.
These include stigma, systematic exclusion and limited understanding of how to adapt treatments to support impairments in communication and cognitive difficulties.
Physiotherapists may lack confidence in treating this population but they have the potential to make a significant positive impact.
Introduction
Joanna-lee Tan
Promoting the role of physiotherapy in dementia care has long been a focus of the APA Gerontology group and a growing number of our members are choosing to work in this field, whether through clinical care or research, in dementia education or as consultants providing specialist advice.
The APA has supported this endeavour through previous publications, the ‘Five facts’ series and a joint statement with Dementia Australia released in 2023 (pdf here).
Joanna-lee Tan
Dementia Action Week is 16–22 September.
This year, the theme is making our communities more dementia- friendly.
As physiotherapists, we can increase our knowledge of the condition and learn how to assist clients who are living with dementia within our usual care.
We can develop specific skills to address the symptoms associated with dementia and establish a rehabilitation approach as well as advocating for access to physiotherapy.
Physiotherapists may find themselves contributing to the assessment and ongoing care of clients with a diagnosis of dementia in a variety of different settings, with presentations in acute and primary care as well as in aged care settings.
Members of the APA Gerontology group who have a special interest in the field of dementia write here about physiotherapy’s contribution to the care of people living with dementia and the need for further undergraduate clinical experience as well as the development of evidence-based programs, patient information material and guidelines for clinicians.
The importance of early diagnosis and access to rehabilitation for people living with dementia is highlighted by Associate Professor Michele Callisaya, who has previously published research into dementia care and is currently working on the INCLUDE study on access to rehabilitation for dementia patients, which is in progress and which the APA has supported.
This study has led to the development of a training course for health professionals to improve their knowledge of dementia rehabilitation, an analysis of which will be part of the study outcomes and freely available at the end of the study.
Outcomes of the study will also include an update to Dementia Australia’s The Dementia Guide (here), with more detail added about the role of allied health in dementia care.
Stephen Quick discusses his recently completed PhD on physiotherapy students’ knowledge and understanding of dementia, while Cath Evans describes her journey from clinician to researcher and her current PhD focusing on the development of guidelines for physiotherapists working with people with dementia.
Thomas Senyard looks at the challenges and rewards of working with clients with dementia and their families.
People with dementia need physiotherapy too
Michele Callisaya
Every year on 21 September, people and organisations from around the world join together to raise awareness about dementia for World Alzheimer’s Day.
In Australia it is estimated that more than 420,000 people are living with dementia, including nearly 30,000 with younger onset dementia.
Michele Callisaya
Dementia is a major cause of disability, causing difficulty with everyday meaningful activities and relationships.
As well as cognitive impairment, dementia is also associated with poorer mobility and a greater risk of falls.
All physiotherapists are likely to encounter people living with cognitive impairment and dementia in their work, whether in the community, hospital or residential care.
There is now good evidence for the role of physiotherapy interventions in improving mobility, slowing cognitive decline, supporting psychological function and reducing falls (Lam et al 2018, Law et al 2020, Mak et al 2022).
However, many physiotherapists lack confidence and knowledge about dementia, particularly in relation to communication and cognitive and behavioural strategies (Quick et al 2021) and only a few hours of education are dedicated to dementia in undergraduate training (Quick et al 2024b).
People with dementia are still excluded from services and therapies that are available to those without dementia.
Recent guidelines recommend treating dementia as a disability and a condition that benefits from rehabilitation after diagnosis (World Health Organization 2023) but this is rarely offered.
There is a specific focus this year on the stigma surrounding Alzheimer’s and other types of dementia.
We would like to call on all physiotherapists to increase their knowledge of dementia and to learn communication and cognitive strategies so that people with dementia can receive the best quality care possible.
Physiotherapists are often under-recognised members of the dementia multidisciplinary team and as a profession we will need to advocate for our role to ensure that our patients have access to care.
What do physiotherapy students know about dementia?
Stephen Quick
As the prevalence of dementia rises and evidence builds up demonstrating the benefits of physiotherapy for people with dementia, the role of the physiotherapist in dementia care continues to grow.
Understanding the current state of the profession is crucial for developing effective clinical practice guidelines that cater specifically to the needs of physiotherapists working with people with dementia.
Stephen Quick
The education a physiotherapist receives as an undergraduate is an important component of their overall understanding of what it means to work with someone who has dementia.
A systematic review completed in 2022 examined the knowledge, confidence, attitudes and beliefs of physiotherapists and students in relation to working with people with dementia, shedding light on important aspects of their current practice (Quick et al 2022).
According to the findings of the review, students believe that working with people with dementia is complex and challenging and may lead to stress and burnout.
They feel that there are gaps in dementia education due to inadequate training at an undergraduate level.
Students expressed a lack of knowledge about some aspects of dementia care—including general knowledge about dementia, behavioural management and pain management—and a lack of confidence about working with people with dementia, including working with people with communication or behavioural symptoms.
A qualitative study published earlier this year looked at how prepared physiotherapy students at three metropolitan Australian universities were to work with people with dementia on graduation (Quick et al 2024a).
The overarching theme of the findings was that the students’ experience of providing care for people with dementia was variable.
Students reported significant challenges when working with people with dementia and described a range of emotions, such as the experience being ‘overwhelming’.
Challenges included managing cognitive impairment and behavioural and psychological symptoms as well as the way symptoms can fluctuate from person to person and, in some instances, from hour to hour.
Importantly, students perceived their dementia learning experiences to be mostly inadequate and made a number of suggestions to improve them.
Students noted that their experiences were significantly shaped by their clinical placement supervisors.
While some supervisors offered positive support through tips and advice, others left students feeling unsupported and ‘protected’ from more challenging presentations, ultimately affecting their preparedness as new graduates.
Students advocated for more learning from real-life experience where possible.
This finding has been supported by a recent study of Canadian physiotherapy students and their experiences working with people with dementia during their clinical placements (Hunter et al 2022).
From clinical care to guideline development
Cath Evans
I began my physiotherapy career in 2017 as a new graduate, working for the Southern Adelaide Local Health Network in the Rehabilitation, Aged and Palliative Care division.
The position involved rotations across inpatient and outpatient services, building skills and knowledge in the management of an array of conditions.
Cath Evans
However, it wasn’t long before I identified my true passion— supporting people living with dementia to maximise their physical function, independence and quality of life.
I found it extremely rewarding to assist people living with dementia during their inpatient stay; the benefits of physiotherapy interventions extended to carers and families, who were always appreciative of our support and time.
I began working permanently on geriatrician-led wards known as Geriatric Evaluation and Management and the Specialist Advanced Dementia Unit, where I was motivated to support early career physiotherapy staff and physiotherapy students and to help them have a positive experience when working with people living with dementia.
I encouraged my peers to consider the impact they can have when working in this critical area of care.
The physiotherapy department upheld a strong research culture and from the start, as a rotational physiotherapist, I was encouraged to participate in quality improvement projects.
However, research became more meaningful and rewarding for me once I began working in the area I was most passionate about (the Specialist Advanced Dementia Unit and Geriatric Evaluation and Management), where I took part in research activities and service development to optimise the service we offered to our patients.
My drive to improve healthcare—specifically physiotherapy services for those with dementia—along with my enjoyment of quality improvement and service development motivated me to undertake postgraduate study.
With encouragement from my physiotherapy manager and support from the organisation, I began a higher degree by research at Flinders University.
Initially I enrolled in the Master of Health and Clinical Research, which gave me the opportunity to develop my research skills through foundational coursework followed by participation in a research project.
I thoroughly enjoyed my studies and successfully applied to upgrade to a PhD.
Caring for people with dementia often challenges physiotherapists and physiotherapy students, who report low confidence and uncertainty when working with this population.
To date, no evidence-based guidelines have been developed to support best-practice physiotherapy management of dementia.
Therefore, in order to advance best-practice physiotherapy in dementia care, my PhD project is focused on the development of evidence-based clinical practice guidelines specific to the physiotherapy management of dementia.
As well as providing clarity to physiotherapists in day-to-day practice, I hope that the development of the proposed guidelines will support future teaching in physiotherapy curricula, organisational and community standards, public policy and ongoing research.
During guideline development, there will be a high level of engagement with consumers, including people living with dementia, carers and physiotherapists.
If you would like to be involved, please get in touch (cath.evans@flinders.edu.au) and we will keep you informed.
Working with dementia patients
Thomas Senyard
Working with people diagnosed with dementia presents a specific set of challenges and rewards.
Because many of the signs and symptoms of dementia can complicate standard physiotherapy practices, a tailored approach is required to ensure optimal outcomes.
Thomas Senyard
As a physiotherapist who has had the opportunity to work with people with dementia in both community and hospital settings, I believe that establishing a rapport is crucial.
Cognitive decline often leads to anxiety, confusion and resistance to unfamiliar environments and faces, which are frequently issues in the hospital setting. Within the home environment, an unfamiliar person can understandably be perceived as a threat and treated with suspicion.
Building trust through consistent, empathetic interactions frequently improves a patient’s willingness to participate in therapy sessions.
Traditional physiotherapy techniques may need adaptation for those who are cognitively impaired.
Simple, clear communication is vital. Using short sentences and key phrases, maintaining eye contact and employing a calm tone can help convey instructions more effectively.
Exercises should be straightforward, functional and enjoyable to foster engagement and compliance.
Incorporating past experiences or interests such as music or sporting activities is often beneficial.
This can be challenging in the acute hospital setting but having a discussion with family members prior to review can assist with understanding the patient and what is important to them.
Dementia patients may exhibit behavioural changes such as agitation, aggression or apathy.
Understanding the underlying causes of these behaviours is essential.
Pain can frequently manifest as agitation and is often under-recognised.
When working with someone who is acutely unwell or who has had a fall, look for non- verbal signs such as grimacing, fidgeting or calling out.
Appropriate pain management can improve a patient’s receptivity to therapy, so provide feedback to nurses and medical staff to ensure that the patient is as comfortable as possible.
Sessions may need to be adjusted based on the patient’s mood and behaviour on any given day.
Someone with dementia may not know why they are being made to ambulate or exercise and the treatments provided by physiotherapists may be uncomfortable or challenging, even for those who aren’t cognitively impaired.
It’s important to remain calm and positive even when progress seems slow.
Caregivers play an essential role in the rehabilitation process.
Educating them about why physiotherapy may be beneficial to the patient and teaching them simple strategies and exercises to do at home can assist with maintaining any functional gains.
Carer stress is a frequent issue among caregivers—try not to overburden them and do link them in with supportive services if appropriate.
>>Joanna-lee Tan MACP is currently working for Flinders University at Aged Care Research and Industry Innovation Australia and has extensive experience in private practice, community, home and residential aged care settings in both metropolitan and rural areas. Jo is an APA Gerontological Physiotherapist and is the national chair of the APA Gerontology group.
>>Associate Professor Michele Callisaya APAM is a principal research fellow at the University of Tasmania and a senior research fellow at Monash University. Michele is a member of the APA Gerontology group.
>>Stephen Quick APAM is a physiotherapist and allied health interprofessional educator at Northern Health in Epping, Victoria. He is in the final stages of his PhD at Monash University on the topic of physiotherapy and the care of people living with dementia. Stephen is a member of the APA Gerontology group.
>>Cath Evans APAM is a physiotherapist with expertise in the management of older adults and people living with dementia. Cath is a PhD candidate and research assistant in the Caring Futures Institute, College of Nursing and Health Sciences, Flinders University. Her PhD is focused on the development of clinical practice guidelines for the physiotherapy management of dementia. Cath is a member of the APA Gerontology group.
>>Thomas Senyard APAM is a senior physiotherapist in gerontology at Gold Coast Hospital and Health Service. He has experience working with older and frail patients in acute care settings, in the community and within residential aged care facilities. Thomas is a member of the APA Gerontology group.
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