Dementia

“Visiting Alzheimer Scotland gave students valuable insight into how third sector organisations operate in practice. Hearing from fellow students supported peer learning while exploring the charity’s work in fundraising, engagement and post‑diagnostic support brought classroom learning to life.  We are very grateful for our ongoing partnership in developing a dementia‑informed AHP workforce in Scotland.” Ashleigh Gray, Practice Education Lead, Edinburgh Napier University

Introduction

On the 30th of March 2026, Pre-Registration first year, Master students of Occupational Therapy and Physiotherapy from Edinburgh Napier University attended Alzheimer Scotland, National Centre in Edinburgh as a part of their community visit.

Occupational Therapy students from Queen Margaret University; Emma and Aoife – who are writing this very blog! – delivered a presentation on The Voice of Lived Experience, informing the Edinburgh Napier students about the Scottish Dementia Working Group and the National Dementia Carers Action Network. As a welcome to Alzheimer Scotland, the students received a folder of self-management resources that can support their work now and in the future, with an emphasis on occupational therapy and physiotherapy resources found at www.alzscot.org/ahpresources and www.cpcs.online and peer to peer resources developed by the Scottish Dementia Working Group. The students had a tour of our day services and brain health hub with presentations about the Role of Fundraising and Engagement and Alzheimer Scotland Post Diagnostic Support and the role of the link worker.  Thank you to Elaine Hunter for coordinating and welcoming the students to an informative day!

Setting the Scene

We began the presentation about the voice of lived experience by firstly introducing ourselves and informing the Edinburgh Napier students that we are Queen Margaret University students on placement, so there was no pressure on either side!

We wanted this presentation to highlight the people at the heart of dementia care and the important work they complete for community outreach. The presentation brought together the work of two influential campaign groups- the Scottish Dementia Working Group (SDWG) and the Nation Dementia Carers Action Network (NDCAN). Both of these active voice groups play a vital role in shaping dementia practice, policy and the public understanding in Scotland. We felt it was important for the Edinburgh  Napier students to understand what these groups campaign for. As professionals, they will encounter people living with dementia and carers, they will also be following legislation and policy that has been shaped by these groups.

We wanted to complete a group activity after the introductions as to who the active voice groups are, and what they do, where we asked:

• How would you practice as a professional to ensure the person living with dementia’s voice is heard?
• How can you make your practice person-centred?
• If you were a member of SDWG what would you campaign for?
• If you were a member of NDCAN what would you campaign for?

After giving time to answer, we wanted to hear feedback so we could understand where we needed to expand on information and context about these groups. Moving onwards from the group questions, we included a page of quotes from the active voice members as it was extremely important to highlight their opinions and experiences.

“By treating those you will work with in your careers as ‘individuals’, supporting and encouraging them to be themselves and do what’s important to them, you will be able to help ensure they are not defined by their situation, but that they continue to live their best life possible.” Stuart, SDWG

“There is a big opportunity for you as AHPs to see yourselves in the role of consultants. By that I mean passing on some of your skills to the carer so that they can, to some extent, reinforce and multiply the value of your work.” Frank, NDCAN

The aim of these groups is to spread awareness and we equally wanted to follow this.

After the discussion of answers, reflections and feedback, we explained a little more in depth about what NDCAN and SDWG have achieved. This was a fantastic opportunity that can challenge the students’ preconceptions and show them the extensive work active voice groups have been involved with. For example, SDWG have presented at global conferences across Europe and Asia and contributed to international dementia discourse. As a result, Scotland is now recognised as a global leader in dementia policy and advocacy. Members from NDCAN have sat on the national boards for both the new Dementia Strategy and the Carers Act implementing their voices of experience to promote change.

Finally, we asked the Edinburgh Napier students if they had any questions about our time on placement (none of them have been on a placement in their Master course yet!). We explained how this placement focuses on public health and the spreading of information. It is a project based placement in line with the charity values, and most importantly, speaking to those directly living with dementia and carers.

Lasting Impact on Students Perception on dementia

From the interactive segment of the presentation we provided a QR code which brought the students to a page to answer the following questions: ‘How would you practice as a professional to ensure that the person living with dementia’s voice is heard?’ ‘how can you make your practice person centred?’ ‘If you were a member of NDCAN what would you campaign for?’, ‘If you were a member of SDWG what would you campaign for?’. We could see that students seemed to take away a strong commitment to person centred, ethical practice informed by lived experience. QR feedback highlighted the importance of speaking directly to the person, listening with patience, while still appropriately involving family and carers.

Students reported gaining a wider understanding of dementia services in Scotland, post diagnostic support, and how to signpost effectively. Feedback described the presentations as powerful and moving, noting the passion and care demonstrated by speakers. Engaging with lived experience supports the development of critical thinking, compassion, and ethical decision making, while reinforcing the value of co production and ensuring the service user voice remains central to practice.

Some answers from the students:

How would you practice as a professional to ensure that the person living with dementia’s voice is heard?’

“Understand what is important to them and what their priorities are in daily living. Involve the individual and their family in decision making. Be patient and ask clear questions regarding care.”

If you were a member of NDCAN what would you campaign for?

“Funding, awareness, destigmatization, accessibility, education for new practitioners, early diagnosis education”

If you were a member of SDWG what would you campaign for?

“Improve public awareness and education of dementia and ways to accommodate for individuals with dementia in public settings. Reduce stigma and allow fair treatment.”

Lasting impact

The end‑of‑day evaluation revealed just how effective the visit was for these students. Many highlighted that “seeing the level of care and consideration from everyone involved was really powerful and moving” and valued learning about the real work of SDWG and NDCAN. Others appreciated gaining “a wider understanding of the services in Scotland” and the role of link workers.

Key takeaways centred on applying a person‑centred, stigma‑free practice—students spoke about using respectful language, understanding individual experiences, and confidently signposting people to support. Several noted they now recognise the wider support services around dementia care and feel better equipped to contribute meaningfully in future clinical roles.

Personal Takeaways

Through this experience, we learned the importance of careful planning, clear wording, thoughtful layout, and understanding our audience. We have learned how the work from third parties is collaborative and effective to creating resources, raising awareness and most importantly, keeping those living with dementia and carers at the heart of their work. This enabled us to effectively communicate valuable information in the hopes these students will take forth into practice. Delivering the session reinforced our appreciation of the courage required to pose open‑ended questions to a quiet room.

“I have a great appreciation for sharing the knowledge I have gained since being on placement with Alzheimer Scotland. To engage with other students and demonstrate my learning has been beneficial for raising awareness on destigmatisation, resources available and the improvement of service delivery” Emma Galloway, 4^th year Occupational Therapy Student, Queen Margaret University

Contributor: Aoife Gordon and Emma Galloway, Queen Margaret University, Occupational Therapy students

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AHP Let’s Talk About Dementia Blog Feedback Form – Fill out form

Hello! Emma and Aoife here. We are Occupational Therapy Students from Queen Margaret University who were on a 10-week placement with Alzheimer Scotland. During this placement, we have been working with Active Voice Members from the Scottish Dementia Working Group (SDWG). Emma and I had the pleasure of hosting a conversation with Margaret, a SDWG member, to enable us to write a blog scribing her journey. I hope you enjoy this blog helping us all to know who Margaret is.

In conversation with Margaret

Margaret shared with us that she is living with a rare type of frontotemporal dementia at the age of 51. Margaret discussed that she has been living with dementia for 10 years. She explained that this was a hard thing to hear, as there was no cure, especially as her type of dementia is caused by a mutant gene (C9orf72) which causes YOD or motor neuron disease. Her consultant was honest but supportive, and he encouraged her to connect with Alzheimer Scotland. Margaret felt the diagnosis was frightening, but she explained it also pushed her to stay positive and focus on what she could still do and achieve.

Work and Identity

Margaret’s work as a directorate administrator was a huge part of Margaret’s identity. Her story has been featured in the text book, Occupational Therapy and Dementia: Promoting Inclusion, Rights and Opportunities for People Living with Dementia (Maclean et al 2023) . She shared her many years of experience with us, working with allied health professionals and pharmacy teams, and her love for IT. Margaret always been curious about the innovations in IT. Before Margaret’s diagnosis, she described how her working environment did not make reasonable adjustments. unfortunately, she was told that “if she had a different health condition, she probably could have kept working”. Margaret shared that it’s good and important to be positive with a diagnosis of dementia, no matter the type, and your abilities. Margaret has been actively involved in making an inclusive workspace, in 2017 she attended the ‘Working with Dementia’ conference to share her story.

Working with Dementia Network: https://workingwithdementia.org/

Finding My Voice Through Scottish Dementia Working Group

Joining the Scottish Dementia Working Group has given Margaret purpose, connection, and a platform to raise awareness of her rare type of dementia. Margaret also explained how they try to make systems better for others living with dementia. Margaret finds this working group a joy to be part of and values the chance to engage with the public, including professionals and students.

“Just to always see the person and not whatever kind of dementia they have… because we are still people.”

Representing Scotland Across Europe: European Working Group of People with Dementia

Margaret represented Scotland in the European Working Group of People with Dementia. She commits to raising awareness, improving services, and challenging assumptions about dementia. She speaks proudly about contributing to research and national networks, emphasising that “we can still walk and talk.” Her European role built on this drive to ensure that lived experience informs change far beyond Scotland.

 Friendship, Laughter, and Recognition
Margaret shared with us that some of her most meaningful moments have come through connection. Margaret discussed how she “always had good craic” with her experiences being in the frontotemporal dementia groups. At the European Working Group of People with Dementia (EWGPWD) annual conference in Helsinki, Margaret was presented with a plaque to mark her time as a member and Vice Chair. She shared that this was incredibly special, made even more so by the wonderful company of colleagues and friends from Alzheimer Scotland.

Living Beyond Prognosis
Now aged 61, and approaching her 62nd birthday, Margaret has been advised by her Neuro Consultant that she has exceeded her original prognosis, after being diagnosed with frontotemporal dementia at age 51 in 2016. Margaret had been informed that she had a gene mutation that typically causes YOD and in some people MND. Margaret informed us that her case is rare. This milestone holds deep personal meaning, underlining her resilience, while offering a powerful reminder that life with dementia has been meaningful and purposeful for Margaret, especially with her passion to engage with SDWG and EWGPWD.

Why Research Is Key, Raising Awareness of Different Dementias

Margaret tells us that she believes strongly in research being vital to shaping the future for people living with dementia. For her, research is key for advancements. This belief is closely connected to her commitment to raising awareness of rare and young onset dementias. Through media involvement, education, and public engagement, Margaret continues to challenge misconceptions, ensuring that lived experience informs research, policy, and the way society understands dementia.

This also aligns with Margaret’s longstanding interest in innovation and how systems work. Curious by nature, she is drawn to new ideas, research, and improved ways of ensuring inclusivity and delivering support. This interest continues to shape her involvement in education, service development, and research informed by lived experience. Margaret voiced that when she meets with students, she hopes that they takeaway “Just to always see the person and not whatever kind of Dementia they have.”

“I have always enjoyed, IT and just innovation of anything. So, yeah. I’ve always been curious about how things work”

Closing Reflection: Looking Forward
Looking ahead, Margaret remains motivated by a strong sense of purpose and hope. Margaret shared with us that she remains thankful for every day.  Her commitment to advocacy, research, and connection continues to drive her forward, grounded in the belief that people living with dementia can shape change, challenge assumptions, and live meaningful, active lives.

Thank you for taking the time to read this blog post.

Contributors.  Emma Galloway and Aoife Gordon, Queen Margaret University, Occupational Therapy Student.

Thank you for taking the time to read this blog post.

If you want to learn more about SDWG or join, please visit this link here

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

Allied Health Professionals have created a suite of information resources for people with dementia, their families and carers that you can find here

Enjoyed this blog? Tell us more. We love feedback.

Please spend 1 minute completing this short anonymous feedback form to allow us to make our blog posts even better in 2026. Thank you

AHP Let’s Talk About Dementia Blog Feedback Form – Fill out form

Hi Everyone! I’m Aoife Gordon, I am a final year MSc Occupational Therapy Student (Pre-Registration) at Queen Margaret University. My last practice placement has been with Alzheimer Scotland, giving me the opportunity to work with their two campaign groups; Scottish Dementia Working Group and the National Carers for Dementia Action Network. One of my learning outcomes has been to share my work, reflections and learning on social media. Which has led me to write this blog, as the campaign groups encouraged a reflection on any preconceptions or stigmas, I had before starting this placement.

Before starting my placement and since attending meetings with the Scottish Dementia Working Group (SDWG) and the National Carers for Dementia Action Network (NDCAN), I found that I had preconceptions of dementia. It feels important to write about this, so that other AHP students can perhaps relate, reflect and potentially challenge their own preconceptions of what dementia is or is not?

My undergraduate qualification was in general nursing, where much of my experience was hospital based and involved caring for people who had been diagnosed with dementia for a number of years, often experiencing delirium and significant distress. In this setting, people’s environments and routines usually changed suddenly, and I understood just how important stability and familiarity are for people living with dementia. However, that clinical lens shaped my expectations more than I realised.

I did not realise that I was carrying assumptions, about what dementia can be for others, how people would communicate, and who would hold influence in the room, particularly when attending group sessions with SDWG members. I assumed professionals would guide discussions and that people living with dementia would be supported to engage, rather than driving and leading the conversations themselves. I also held some tunnel visioned preconceptions of caring, imagining it largely as practical support: help with eating, drinking, washing, or getting from A to B. I hadn’t fully grasped the impact that being an unpaid carer can have on identity, finances, employment, and a person’s sense of self.

What I encountered while on my placement with Alzheimer Scotland challenged all of that. I was struck most by the positivity, humour, and strength of people living with a dementia diagnosis. When I was in attendance with SDWG members I noticed laughter, often shared, and a sense of connection that felt deeply human. Members sometimes joked about certain aspects of their experiences together, on their own terms. This wasn’t minimising or denial; it was agency. The language used across both groups was consistently person-centred, respectful, and thoughtful. Conversations were clear, purposeful, and led by lived experience.

I was also unaware before starting my practice placement, how influential both SDWG and NDCAN groups have been. I had assumed staff would shape opinions or lead discussions, but I quickly learned that staff are intentionally there to support, not to give views of their own. The voices that mattered most were those of people living with dementia and their supporters’. Seeing firsthand how lived experience directly shapes policy and service provision was powerful, and not something I could have understood fully without being present.

Alongside working with both the campaign groups, I also had the opportunity to attend as a volunteer with Brain Health Scotland at the Alzheimer Scotland Shooting Stars event, helping to run a smoothie bike stand. The smoothie bike allowed for conversations to be help surrounding the impact of physical activity and a balanced diet on risk reduction for dementia. The bike created a very different but equally important space for conversation. The interactive nature of the bike allowed me to engage mostly with children, talking about brain health in an accessible and positive way. It reinforced for me how early education can help challenge stigma before it forms, and how creating inclusive, approachable environments can make difficult topics feel normal rather than frightening.

As these realisations set in, I felt disappointed that I had held these preconceptions, having completed TURAS modules; such as ‘Trauma skilled practice in dementia care’, I can understand the impact awareness can have in your professional delivery of care. What also helped was the openness of the groups in acknowledging that many people arrive carrying stigma or uncertainty. Being encouraged to reflect, and even write about it, created space for my learning and reflections.  If I could speak to my past self before my first meeting with SDWG and NDCAN, I would say: Just be present. Ask questions. Take it all in. Don’t be afraid of getting things wrong.

Having listened and learned, I now feel a responsibility to play a role in increasing an understanding of brain health, dementia, promoting inclusion, through even spreading awareness to others regarding dementia friendly aspects they could easily carry out day-to-day and as health and social care professionals. I can help educate others about stigma, challenge assumptions about ability and influence, and support the use of respectful, person-centred language. I think many people avoid dementia-related spaces out of fear, fear of saying the wrong thing or making things ‘worse’. But what I have learned is that people who have the knowledge to share about dementia, especially those I have met throughout my placement, such as SDWG and NDCAN members, all the Alzheimer Scotland staff I have encountered and my Practice Educator Elaine Hunter,  are often open, patient, and willing to educate, when approached with honesty and respect

I want to carry these insights forward in my future career as an occupational therapist by challenging stigma, advocating for inclusion, and encouraging others not to let fear stand in the way of connection. Listening changed my understanding. Showing up, changed my perspective. I hope sharing this reflection might make it easier for someone else to do the same.

Thank you for reading this blog. As I come to the end of my final placement, I would like to extend my sincere thanks to everyone who has contributed so meaningfully to my learning and development. To the members of the Scottish Dementia Working Group and the National Dementia Carers Action Network, thank you for your openness, honesty, and willingness to share your experiences. Listening to your perspectives has been both a privilege and a powerful reminder of the importance of person-centred, rights-based practice. To the staff at Active Voice, thank you for creating such a welcoming and supportive environment. Your commitment to amplifying the voices of people with lived experience has been inspiring, and it has challenged me to think more critically about my role as a future occupational therapist. To my practice educator, I am grateful for your support and facilitation throughout this placement. This experience has had a lasting impact on how I will approach my future professional role. I leave this placement with a strengthened commitment to advocacy, collaboration, and ensuring that the voices of those with lived experience remain central to practice.

Contributor:  Aoife Gordon, Queen Margaret University, MSc Occupational Therapy (Pre-Registration) Student

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

If you would like to learn more about the Scottish Dementia Working Group click here and the National Dementia Carers Action Network click here

Allied Health Professionals have created a suite of information resources for people with dementia, their families and carers that you can find here

Enjoyed this blog? Tell us more. We love feedback.

Please spend 1 minute completing this short anonymous feedback form to allow us to make our blog posts even better in 2026. Thank you

AHP Let’s Talk About Dementia Blog Feedback Form – Fill out form

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, 4^th 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

Enjoyed this blog? Tell us more. We love feedback.

Please spend 1 minute completing this short anonymous feedback form to allow us to make our blog posts even better in 2026. Thank you

AHP Let’s Talk About Dementia Blog Feedback Form – Fill out form

Hello! Emma and Aoife here. We are Occupational Therapy Students from Queen Margaret University on a 10-week placement with Alzheimer Scotland. During this placement, we have been working with Active Voice Members from the National Dementia Carers Action Network (NDCAN). Emma and I had the pleasure of hosting a conversation with Ian, a NDCAN member, to enable us to write a blog scribing Ian’s story. I hope you enjoy this blog helping us all to know who Ian is.

In conversation with Ian

Ian is a member of the National Dementia Carers Action Network and he was a devoted husband who cared for his wife Nancy throughout her journey with dementia. It was important to Ian to share his story, he describes it as, his story matters as it shows what compassionate home care can look like when families and services truly work together. In sharing his experience, Ian offers a glimpse into the strength, compassion and partnership that made caring at home not just possible, but meaningful. Ian describes a positive experience of caring at home due to the influx of support from their local community, early and coordinated care, and partnership working.

Ian cared for his wife, Nancy, throughout 14 years of her dementia journey, supporting her closely since her diagnosis in 2008 up until her end of life. As her mobility and independence declined, especially after she became bedbound, Ian became her constant companion, handling everything from eating and drinking to daily company, supported by a dedicated team of home carers. Home was where Nancy felt most comfortable, surrounded by familiar routines, cherished memories, and the people who loved her. For Ian, keeping  Nancy at home wasn’t just a preference, it was an extension of their lifelong partnership, a way of preserving her dignity, independence, and the way they’d always done things as a pair.

“We always were a pair that did things together”

“It wasn’t a task. It was just the way we lived.”

Actively involved in his wife’s care, Ian shared cherished memories of their annual trip to the Isle of Skye, a very meaningful place. However, he noticed a change in Nancy’s care needs through these trips as she progressed in her journey with dementia. Ian explained how he would not see the progression as clearly at home due to their will structured routine at home.  Ian told us that as Nancy’s journey through Dementia progressed, typical walking distances were shorter, stairs became difficult to manage, and he describes transfers from the car became a challenge, as it became difficult to follow verbal instructions. However, Ian found creative ways to support Nancy, such as using a coin that was in the footwell of the car to direct her attention to transferring, as direct instructions were unclear for Nancy.

Ian and Nancy were a well-known couple in their community and wouldn’t need to look far for a helping hand. Neighbours and friends would often drop by to have a conversation, allowing Ian to be present to enjoy these visits where Nancy was also included. Home carers also ensured to include Ian in his wife’s care, alongside building both a personal and a professional connection. Ian and Nancy connected with Occupational Therapy, Speech and Language Therapy, Community Psychiatric Nurse (CPN) and their General Practitioner. He highlights how the early access and signposting from these services were essential.

“People were very helpful. If you look for the good in people, it’s there.”

For Ian, partnership working was what made caring for Nancy at home truly possible: a network of family, home carers, nurses, therapists and a CPN who all communicated, anticipated needs and worked as a unified team. Ian spoke of the importance of his  family support saying “looking back now, my family were a huge support to me, not only in the earlier years but especially when Nancy was housebound and during Covid. My daughter and her husband took their holiday in Skye at the same time but stayed in different accommodation to give us some independence but support when needed.  My son supported us before moving to Australia in 2014 and offered help and advice through his role as a music therapist. I think it could have been impossible without their support”. The continuity of familiar staff visiting four times a day meant Ian felt supported rather than alone, and he trusted their skill as well as their kindness. Ian described being listened to, included in every decision, and treated not just as a bystander but as a lifelong partner in Nancy’s care, someone whose knowledge of her was valued. When challenges arose, from equipment needs to changes in swallowing or mobility, solutions were found collaboratively and quickly, reducing both the emotional load and demands on Ian. This shared responsibility created a safety net that held both of them, allowing Ian to focus on simply being with Nancy, allowing Ian to be a part of the team, he never assumed or wanted this caring team to solely carry out care for Nancy without his involvement.

“That became virtually our family. These were the people who came in four times a day, looked after her, looked after me to a certain extent as well.”

Ian summarised in 4 points what he describes as “What Good Care Can Look Like” and these are outlined below:

• Compassionate, clear and constant communication from healthcare professionals.
• Maintaining person-centred care whilst considering internal support.
• Ensuring services available are discussed and offered in a timely manner.
• Consistency throughout services and coordination where appropriate.

“I’ve had a positive experience”… “why is that not happening now?”

Ian and Nancy’s story showcases how compassionate, coordinated and person‑centred care can transform the experience of living and caring with dementia at home. Through strong partnership working, early support and a community that truly showed up for them, Ian was able to remain an active, valued part of Nancy’s care. Their journey highlights what good care can look like and questions why others are not on this similar journey.

“I don’t think she would have wanted to be in a care home, but I didn’t want her to be.”

If you want to learn more about the National Dementia Carers Action Network or join, please visit this link here

Question for consideration:

Have you ever thought about what your care preferences would be if required for the future?

Contributors:  Aoife Gordon, Emma Galloway, Queen Margaret University, Occupational Therapy Students

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

Allied Health Professionals have created a suite of information resources for people with dementia, their families and carers that you can find here

Enjoyed this blog? Tell us more. We love feedback.

Please spend 1 minute completing this short anonymous feedback form to allow us to make our blog posts even better in 2026. Thank you

AHP Let’s Talk About Dementia Blog Feedback Form – Fill out form