Outgoing Director of Care and Quality Carole Shares Her Experiences Of Dementia

I first encountered dementia in 1980 when I was aged 18, visiting my Great Aunt Nellie – Nellie was short for Helen where I grew up, not a name you often hear now. My Great Aunt Nellie was a believer in doing things right, a bit of a stickler; she taught Domestic Science as a young woman. She was smart, independent, witty, sensible, someone who always had an answer for everything. Aunt Nellie did not have children of her own (though I now know she would have liked to). She those took great interest in her nieces, nephews and their children, (which is where I came in). That day when I visited my Great Aunt, this wise, intelligent woman, kept saying to me, “I need to make Tom’s dinner.” I knew Uncle Tom, only from photos. My 18 year old self thought I knew more than I did, but still didn’t know what to say to Aunt Nellie. When I gently said, “I’m sorry, Uncle Tom died,” Aunt Nellie kept on wanting to make a meal for her long dead husband. I reminded her more than once, but of course, she didn’t remember what I was telling her. Uncle Tom died in 1958.

Now, I am much older and hopefully a little wiser. I have had the chance to meet so many wonderful, inspiring people whose lives have been touched by dementia. Working with clients, their families, and care professionals; together we have built our knowledge and understanding.

Having delivered Home Instead’s Award Winning Course in Dementia to 39 of our Care Professionals, I know the difference this makes for participants, in developing their skills and confidence, improving communication and ability to engage with people living with dementia, helping our Care Professionals to understand and constantly adapt to the needs of clients. The high quality of our specialist courses in Dementia and in End of Life, resulted in Home Instead nationally achieving the Princess Royal Award for our Dementia Course in 2016 and again in 2019 for the End of Life Course.

If I could have known then, what I know now, I would have approached Aunt Nellie differently. How do we know the right thing to say and do? It’s difficult, but knowing the person is critical in helping to understand what is happening for them, as is what you say and how you say it. Respond to emotion, but do things to soothe and help, don’t fuel fires, put them out or if you can’t at least move out of the way. Aunt Nellie was back in a different time, in those days she didn’t work, her role was in running their household, keeping everything organised, spick and span, keeping to her standards, caring for her husband and her wider family. When her mother in law became frail, Aunt Nellie looked after her at home until her death. Uncle Tom relied on Aunt Nellie, loved her, needed her as his wife and support. All those years later, Aunt Nellie still felt she needed to look after him, to fulfil her role as a wife, to be important, to be valued, even though he was no longer physically there – Uncle Tom was alive in her mind.

I wish I had found my way in to her world, joined her in the place she was in time. I should have offered to help her to set the table, or to make dinner with me. We could have taken a walk outside, for fresh air, gone in to a different room, had a cup of tea. I could have asked her about her life, about happy memories before Tom and with Tom. We could have talked and talked. Maybe I could have written some of this down. Certainly, we could have looked over her photos and talked about them. I wish I had asked her about those times. I never did. Aunt Nellie died not long after this in November 1981; she was diagnosed as living with dementia.

I learned from the memorable people, families and Care Professionals I have met since working with Home Instead but have also been inspired by Alzheimer’s Society to contribute to fundraising activities. The theme of Dementia Action Week this year was about the importance of diagnosis, to help make sense of what is happening, to consider treatment, to begin to plan and maybe make changes, taking time to spend with people doing the things you enjoy.

Dementia diagnosis rates are varied in different parts of the country, as is the length of time taken to access the medical specialists. Too many people face dementia alone. Getting a diagnosis is daunting, although research by the Alzheimer’s Society highlighted that of those respondents living with dementia, 91% believed that getting a diagnosis benefitted them, enabling future planning, gaining access to sources of advice and support; getting help when needed, avoiding a future crisis point.

Support for people living with dementia, carers and families remains absolutely vital, as is access to acivities which people can enjoy and participate in. Aunt Nellie, (who used to go curling, would agree).