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
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