Dementia and “activist” occupational therapy

Miia Rahja

Miia Rahja

PhD candidate, Miia Rahja, is an occupational therapist and a member of the CDPC project team, Care of Older Persons in their Environment (COPE).

In this Q&A she speaks about her presentation at this year’s World Federation of Occupational Therapists Congress. She presented the paper, Economic evaluations of occupational therapy for people with cognitive and/or functional decline: A systematic review to 70 delegates.

Would you tell us about your presentation?
In my oral presentation I discussed the findings from a systematic review that looked at the costs and effects of occupational therapy approaches for people experiencing cognitive and/or functional decline (including dementia) to date.
I summarised findings from 13 included papers and highlighted that for better economic outcomes therapists should incorporate approaches that include systematic, or multiple components and combine a number of consultation sessions, focus on improving the home environment, the ability of the person and the skills of their caregiver.

What sort of response did you get?
Following the presentation some key researchers in the field from Europe introduced themselves as they were interested in our work in Australia, including the COPE project. A few were also in the progress of implementing evidence-based interventions for people with dementia in countries such as Austria and the UK.
We had a further conversation about the experiences we have had in our respective countries. They also requested a copy of the published review to use in their future grant applications.

What are the benefits of the COPE project for dementia care?
The project upskills a number of occupational therapists (COPE therapists) to provide evidence-based care for people living with dementia. This means that participating organisations can now offer care that is preventative and not reactive to the healthcare needs of people living with dementia.
COPE is unique in that it can be tailored to meet the needs of people with dementia and their caregivers, called a “dyads”. COPE works with these dyads teaching techniques on how to improve the home environment, the ability of the person and the skills of their caregiver.
The aim is to keep people with dementia at home for longer (if they so wish) and improve the wellbeing of the caregiver. The benefits are often seen in caregiver stress reduction and increased problem-solving skills, as well as improved activity engagement for the person with dementia.

You presented a poster, “Are we undertreating? An audit of current occupational therapy practice for people with dementia in Australia”, would you tell us about it and the reception it received?
The title invited many comments and opened dialogue about the current occupational therapy practice and how this compares to best practice recommendations for care of people with dementia.
This was an opportunity to explain why we conducted the audit and how it was related to the COPE Australia project in more detail. We wanted to provide a snapshot of what has been happening in different care settings before the introduction of programs such as COPE in Australia.
I had 12-14 delegates expressing further interest in the poster and wanting to duplicate a similar study in their respective areas. Some also expressed their desire to develop programs or courses to better prepare occupational therapists to support people with dementia.
We look forward to future work and publications demonstrating uptake of the program and organisations’ willingness to engage in the delivery of longer intervention programs for people living with dementia in the community.

I understand you met the COPE co-investigator from the US, Catherine Piersol, who was the original interventionist. Please tell us about her interventions and beliefs?
Yes, Catherine appears to be very much involved in interventions that support caregivers of people with neurocognitive disorders, such as dementia. She believes it is important to empower caregivers to look after their loved ones and has co-authored a book “A caregiver’s guide to dementia: Using activities and Using Activities and Other Strategies to Prevent, Reduce and Manage Behavioral Symptoms”.
We use this book with our caregivers in the COPE program. Catherine continues to be engaged in delivering evidence-based interventions for people with dementia and other and other neurocognitive disorders (and their caregivers) and is involved in a in research translation and delivery of evidence-based interventions into real-world contexts.
We also had a great chat about courses and upskilling occupational therapists in caring for people with dementia.

Why be an activist occupational therapist in terms of dementia care, what is that about, what does it look like?
I learnt new perspectives and one of the key take home message for me was the need to “be an activist” and educate different stakeholder about the unique and varied knowledge and skills that us occupational therapists have. It appears that, across the globe, the profession is still not well recognised by many consumers and/or other health professionals; a concept that needs changing.
We need to be proud of our profession and confident in how we explain it to others. We need to be forward thinking and up to date with strategies we can use to advocate, educate and market ourselves. This could be, for example, by using social media, free press, blogging or other means of public relations.

What would you say as an elevator pitch to a health funder about why occupational therapy is good for people with dementia in both community and residential care?
This links with the part about dementia care in your previous question. Currently, there is no cure or general medical treatment that improves quality of life for people with dementia. What is unique about occupational therapy is that it is the only profession that offers an opportunity for people with dementia to remain engaged and active in their chosen environment.
We teach about compensatory strategies and remediation so the person can still participate in their daily life, we work to modify activities so the person can still self-care, we educate and up-skill the caregiver so they can continue support their loved one, and more. Considered together, occupational therapy has the potential to reduce the societal and economic costs of dementia.
Dementia is a global health priority. Following a diagnosis, people can live with dementia over 20 years, the average is 7-10 years. This is a lot of time for living and we can bring quality to those years.

women and Miia