By Jacqueline Liddle
What is the evidence for occupational therapy with people living with dementia? And what is occupational therapy anyway?
Occupational therapy, often shortened to OT, is a health profession that many people don’t know about. It was once described as “greatest profession no one has ever heard of” – and a quote from Jessica Kensky, who used occupational therapy services in her recovery, suggested “Occupational therapy is where science, creativity and compassion collide”. But what is occupational therapy? And can it help when you are living with dementia?
Occupational therapy is a health profession where the focus is on occupations, or the things people do:
as part of daily life
in participating in their communities
in forming a meaningful life.
This doesn’t just refer to paid work. Occupations are the everyday activities that people do. This might include preparing meals, catching up with friends, learning an instrument, attending a place of workshop, going for a walk, having a shower, writing a poem, and reflecting on the past. The list is endless – and different for each person. Occupational therapists are interested in making sure people are able to continue with the roles and activities that are meaningful to them.
Occupational therapists do this by assessing an individual (their strengths, needs, disabilities, difficulties, values), the occupation, (or tasks or roles that are part of it), and the environments in which it happens. They then work with the person, the role or activity and/or the environment to support people continuing to do what they need to and want to do. This can range from:
helping someone maintain employment or engagement in volunteering such as advocacy roles, or other meaningful activities;
supporting independence in daily tasks through support new ways of doing things and setting up the home,
and maintain community engagement when driving or other roles stop by learning new ways of getting around and adapting roles.
This also includes recognising that having fun and doing things you enjoy (whatever they are!) is important for quality of life and health outcomes. More reflective occupations including spirituality, contemplation, relaxation and learning are also important. Occupational therapists may support people with understanding changes in their thinking, memory and organisation; sensory modulation and emotional regulation; and help with strategies, environmental modifications and therapy to support quality of life. They may also focus on helping to keep people safe through reducing risks of falls and other risks at home or in the community. Occupational therapists may work with people living with dementia in their homes and communities, in hospital, including in rehabilitation centres, memory clinics and residential care facilities. They are often part of health and rehabilitation teams. They also work to make communities, buildings and technologies more safe, inclusive and usable for everyone.
So, what is the evidence that occupational therapy might help someone living with dementia?
A recent systematic review of occupational therapy interventions delivered to people living with dementia in the community looked at the impact of interventions across 15 trials (and more than 2000 people). Drawing these findings together, occupational therapy interventions (compared to usual care) resulted in improvement in activities of daily living and quality of life of people living with dementia, and quality of life of care partners [1].
Clinical guidelines for occupational therapists in Australia list a range of ways (109 recommendations) that occupational therapists may support people living with dementia: including environmental assessment and modification, supporting problem solving and carer skills training [2]. There are also specific programs with good evidence that occupational therapists may undertake additional training for – like the COPE program.
Importantly, occupational therapists may help with a range of health conditions and disabilities – and work supporting people with physical, emotional, and mental health concerns. Given that people living with dementia may experience a range of health needs, including those not related to their diagnosis of dementia, it is important that people living with dementia are not excluded from receiving occupational therapy, rehabilitation or other interventions for other health and functional difficulties they may be experiencing [3].
What is coming in the future?
Despite the evidence that occupational therapy can help, and the desire of people living with dementia and their family members to access services, often people experience gaps in what is available. Occupational therapists’ roles with people living with dementia are affected by funding and how services are structured. Occupational therapists and others have reported restrictions in being able to deliver optimal care [4]. People living with dementia also identify a desire for rehabilitative services if they were available [5].
There are considerable frustrations with lack of needed supports. There are however indications that there are changing attitudes towards the importance and impact of rehabilitation services for people living with dementia [6,7]. Research and design of environments, technologies and services are also becoming more collaborative. People living with dementia and care partners forming part of design and research teams [8]. It is anticipated these changes will lead to making occupational therapy and other health services more relevant and acceptable, helping to support the known effectiveness in supporting quality of life.
Effective occupational therapy has the following characteristics
personalised
involves assessment, goal setting and monitoring of impact
multicomponent (using a number of different ways of supporting outcomes)
focused on what people do (rather than only symptoms)
considering a person’s environment (including their social environment)
References:
Some introductory information about occupational therapy:
World Federation: https://www.wfot.org/about/about-occupational-therapy
American Association: https://www.aota.org/about/for-the-media/about-occupational-therapy
Forward with Dementia information (occupational therapists and home modifications) : https://forwardwithdementia.au/article/occupational-therapy-and-home-modifications/
References from the summary:
[1] Bennett, S., Laver, K., Voigt-Radloff, S., Letts, L., Clemson, L., Graff, M., ... & Gitlin, L. (2019). Occupational therapy for people with dementia and their family carers provided at home: a systematic review and meta-analysis. BMJ open, 9(11), e026308. https://bmjopen.bmj.com/content/bmjopen/9/11/e026308.full.pdf
[2] Laver, K., Cumming, R., Dyer, S., Agar, M., Anstey, K. J., Beattie, E., ... & Yates, M. (2017). Evidence‐based occupational therapy for people with dementia and their families: What clinical practice guidelines tell us and implications for practice. Australian occupational therapy journal, 64(1), 3-10.
[3] World Health Organization. (2017). Global action plan on the public health response to dementia 2017–2025.
[4] Bennett, S., Shand, S., & Liddle, J. (2011). Occupational therapy practice in Australia with people with dementia: a profile in need of change. Australian Occupational Therapy Journal, 58(3), 155-163.
[5] Laver, K. E., Crotty, M., Low, L. F., Clemson, L., Whitehead, C., McLoughlin, J., Swaffer, K. & Cations, M. (2020). Rehabilitation for people with dementia: a multi-method study examining knowledge and attitudes. BMC geriatrics, 20, 1-10.
[6] Wade, D. T. (2020). What is rehabilitation? An empirical investigation leading to an evidence-based description. Clinical rehabilitation, 34(5), 571-583.
[7] Cations, M., Laver, K. E., Crotty, M., & Cameron, I. D. (2018). Rehabilitation in dementia care. Age and Ageing, 47(2), 171-174.
[8] Liddle, J., Worthy, P., Frost, D., Taylor, E., & Taylor, D. (2022). Partnering with people living with dementia and care partners in technology research and design: Reflections and recommendations. Australian Occupational Therapy Journal. https://onlinelibrary.wiley.com/doi/full/10.1111/1440-1630.12843
Author bio: Associate Professor Jacki Liddle is an occupational therapist and researcher at the University of Queensland, and Princess Alexandra Hospital in Brisbane, Australia. Her research focusses on quality of life, technology and participation, and she is interested in innovative clinical and research approaches that involve partnering with lived experience experts. She is also co-chair of Dementia Alliance International’s Environmental Design – Special Interest Group. More information about Jacki’s research is here https://researchers.uq.edu.au/researcher/1092