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Reflection from occupational therapy students on placement with Alzheimer Scotland regarding young onset dementia
Hello, my name is Chloe, and I am a 2nd year Master of Occupational Therapy Student studying at Queen Margaret University. I am currently on my final practice placement in Alzheimer Scotland alongside another Occupational therapy student, Samantha. We have worked collaboratively over the last 10 weeks to create awareness for our profession. Our efforts have included creating and leading groups in the West Lothian Alzheimer Scotland Brain health and dementia resource centre, with a central focus on meaningful occupations. During this time, we have had the privilege to meet some incredible individuals living with a young onset dementia diagnosis, an experience that has reshaped our understanding of this disease. This blog aims to encapsulate our preconceptions of dementia and how these have transformed and allowed us to recognise the occupational consequences of young onset.
Initially, both Samantha and I had never heard of young onset dementia nor met someone with this diagnosis. After some research and chatting with the centre manager we gathered that young onset can be defined as anyone with a dementia diagnosis under the age of 65 and accounts for over 3% of all dementia diagnoses. This statistic surprised us, highlighting its prevalence and the lack of attention it receives. We reflected on how we had unknowingly fallen into the stigma associating dementia exclusively with older individuals.
Through attending various groups and speaking with insightful individuals within the Scottish Dementia working group we began to recognise the different occupational needs for those with a young onset diagnosis. One stand alone factor was the loss of a working role after a diagnosis of young onset dementia. Many individuals we spoke with shared feelings of frustration and sadness when reflecting on the moment they were medically advised to retire from their jobs due to their diagnosis.
From an occupational therapy standpoint, we recognize this as a loss of occupational identity – a deep-seated sense of self and aspirations shaped by one’s history of engagement in meaningful activities. A loss in occupational identity can have a rippling effect on habits and routine and can cause a person to disengage from other occupations.
Kenny, a member of the Scottish Dementia Working Group, emphasized the potential for continued employment with the right support, stating:
With the right support I have no doubt I could have continued
to do my job and could still be doing it today.”
This quote powerfully captures the challenges faced by individuals with young onset dementia in maintaining their occupational roles and identities. While many individuals with young onset dementia encounter such obstacles, we were inspired by the resilience and resourcefulness demonstrated by those we spoke with. Among them, two individuals, Kenny and Stuart (who is pictured above), found new purpose within the Scottish Dementia Working Group. Stuart has been involved in presenting his story in conferences across the world including the Alzheimer Europe Conference in Helsinki and has also been involved meeting with members of the Scottish government advocating for the rights of those with a dementia diagnosis. Others discovered fulfilment through volunteering or learning new skills, such as photography.
These stories illustrated to us the remarkable capacity for adaptation and growth these individuals have even in the face of significant challenges. They have reminded us of the importance of our role as occupational therapists in fostering environments to support individuals when they are experiencing challenges and help them to explore new avenues for meaningful engagement and participation in occupations. By embracing their strengths, these individuals have continued to lead a purposeful and fulfilling life despite their loss in meaning roles.
Our change in perspective regarding dementia as not just an older person’s disease has profoundly influenced our placement for the better. It has enabled us to acknowledge the stigma associated with dementia and has encouraged us to combat this. Recently, we had the opportunity to presented to first year occupational therapy university students on the topic of Brain Health. During our presentation, we shared insights about young onset dementia and recounted the stories of individuals we had met. The students were visibly surprised and moved by this information, realizing that dementia is not exclusively a consequence of aging. Our presentation carried a powerful underlying message:
Dementia can affect anyone, regardless of age, and it is essential as occupational therapist to recognise the different occupational challenges but also their potential for adaptation in those diagnosed with young onset.
If you would be interested in viewing our presentation slides please click here.
We hope this blog was informative and offered an insight into the professional development that we have undergone during our time at Alzheimer Scotland. We hope this blog will encourage others to recognise the occupational challenges experienced by young onset dementia and empower people to adapt using their unique strengths. Together we can tackle this stigma!
For more information regarding the work we have been completing on our placement please visit the @ahpdementia Instagram page.
Contributors:
This blog was written by Chloe O’Neill Costello and Samantha Henderson, final year Occupational Therapy students at Queen Margaret University. The content was inspired by many of the wonderful individuals that attend Alzheimer Scotland services. We would like to say a special thank you to Kenny Moffat – Member of the Scottish Dementia Working Group and Norman Williamson – Active Voice Development Officer for informing our blog and providing us with a quote.
References:
Health and Care Professions Council (HCPC) (2023) ‘Occupational Therapist: The standards of proficiency for occupational therapists’. Available at: https://www.hcpc-uk.org/standards/standards-of-proficiency/occupational-therapists/. (Accessed: 02 March 2024).
Royal College of Occupational Therapy (RCOT) (2021) ‘Professional Standards for occupational therapy practice, conduct and ethics’. Available at: https://www.rcot.co.uk/publications/professional-standards-occupational-therapy-practice-conduct-and-ethics. (Accessed: 19 March 2024).
SIGN 168 (2023) ‘Assessment, diagnosis, care and support for people with dementia and their carers.’ Available at: https://www.sign.ac.uk/media/2157/sign-168-dementia.pdf. (Accessed: 19 March 2024).
Taylor, R., Bowyer, P. and Fisher, G. (2023) Kielhofner’s Model of Human Occupation. Lippincott Williams & Wilkins. Available at: https://ot.lwwhealthlibrary.com/book.aspx?bookid=3270 (Accessed: 23 March 2024).
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