Lessons from Scottish Dementia Working Group and National Dementia Carers Action Network
Hello! My name is Emma Galloway, and I am a fourth year Occupational Therapy student from Queen Margaret University. I am originally from Antrim in the North of Ireland. I was recently on a ten-week practice placement with Alzheimer Scotland Throughout this placement, I have had the privilege of working alongside the National Dementia Carers Action Network (NDCAN) and the Scottish Dementia Working Group (SDWG). Before beginning this placement, I held my own stigmas and assumptions while having gaps in my understanding of dementia. By engaging directly with individuals who have lived experience, I have been able to challenge my misconceptions and gain insights that will shape my future professional career.
My early stigmas were influenced both by my experience as a care assistant at the age of sixteen and by my personal connection with my Granda, who was diagnosed with dementia in 2013 when I was 9 years old.
Early Stigmas and Misconceptions
From a young age, I have had personal experience with dementia as my Granda was diagnosed in 2013. He displayed signs of living with dementia a few years before diagnosis. His home was a central gathering place for our family, I was looked after there and would always visit. As I was a young child, I did not notice any changes relating to dementia with my Granda. Growing up, I slowly noticed that he would repetitively clean the dishes, as this had been “his job” in the house for years. It became challenging for him to relax and step away from. I found this confusing to watch, as this was the first symptom I noticed. There was an emotional distance and naivety in being younger and not completely understanding how dementia can affect someone.
My family explained dementia to me simply as a condition that caused confusion and forgetfulness. This limited explanation shaped my early belief that memory loss was the only symptom people experienced. As I grew older, I was also told that he might eventually forget who we were, which instilled a fear that he would no longer be the same person. These early messages contributed to a narrow perception of dementia that I carried into early adulthood.
Entering Care Work. My Top Tips and reflections
I entered the world of work at 16 years old as a Care Assistant, primarily supporting those living with advanced dementia. I worked in several care homes working both in one-on-one roles and as part of a team. Looking back, I was working in an environment that in many ways I was not prepared for, and have reflected on during my ten-week placement, if I was to go back to my 16 year old self, these are my top tips for those working in a care setting :
- Learning how to effectively respond to distressed behaviour- get to know the person, read their care plan, understand their needs etc.
- Include the person no matter what stage they are at in their dementia journey.
- Keep the social support systems as involved as possible.
- Be part of the positive change! Seek training opportunities or ways to implement dementia friendly environments into your practice.
- DO NOT assume that because there is a diagnosis of dementia, an individual cannot do something.
Working with Active Voice
Before beginning this placement, I was not aware of the Scottish Dementia Working Group (SDWG) or the National Dementia Carers Action Network (NDCAN). In the first meetings, I was impressed by the real-world impact of their accomplishments. Previously, I did not pay much recognition to who was driving the advancements and changes in communities, only what those changes were. To engage with members and understand how their perspective is considered in policy, the operational considerations of the charity and engagement with the public, was transformational.
One discussion that stood out to me centred on the importance of language. A tool designed to support orientation for people living with dementia had been referred to as a “tag.” Members of SDWG highlighted that this term is commonly associated with pets, making it feel dehumanising and inappropriate. This conversation reinforced the significance of language in supporting identity, dignity, and inclusion. As an emerging occupational therapist, I now recognise how crucial terminology is in challenging stigma and promoting respectful practice.
From NDCAN, I have learned that as an emerging occupational therapist, it is essential to develop a strong understanding of services and effectively transfer information and skills to carers. This not only provides respite to carers but also builds their confidence to implement and explore different approaches. Ensuring that carers feel supported, listened to and equally included is fundamental to practice.
Closing Reflection
I want to express my sincere gratitude to both NDCAN and SDWG for their kindness, openness, and willingness to share their experiences throughout my placement. I have learned an incredible amount that will remain central to my professional development. The ongoing work to challenge stigma and promote understanding is vital, not only within the dementia community but across society. The strong collaboration between these groups, local government, and European partners demonstrates the resilience and impact of active‑voice groups in driving meaningful change.
Quotes that I will remember:
“People were very helpful. If you look for the good in people, it’s there.” Ian, NDCAN
“As you prepare for your new careers, a key message I would give you is – recognise the individual, not their age or their illness. Listen to them and get to know them. Find out about their interests, their feelings, and their views.” Margaret, SDWG
Contributor: Emma Galloway, 4th Year Occupational Therapy Student, Queen Margaret University.
You can find the Alzheimer Scotland 24 hour Freephone Dementia Helpline, for information, signposting and emotional support to people with dementia, their families, friends and professionals here
You can find out more about the Scottish Dementia Working Group here and the National Dementia Carers Action Network here
Allied Health Professionals have created a suite of information resources for people with dementia, their families and carers that you can find here
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