Q+A – Agnes Houston

Agnes Houston shares how her dementia diagnosis disrupted her sensory experience

When Agnes Houston was first diagnosed with early onset dementia 13 years ago at the age of 57, she knew that memory loss was inevitable, but she didn’t expect her sensory experience to be disrupted. Early into her diagnoses, Houston started experiencing intense changes with her vision, hearing, taste and other senses — she was constantly hit with a sensory overload that made coping with dementia even more difficult than she’d imagined.

Not getting answers from her doctors, Houston took to learning more about how dementia can affect one’s senses, earning a Churchill Fellowship research grant to travel from her home in the U.K. to explore the topic in Canada and Ireland. This spring, Houston published a book titled Talking Sense: Living with Sensory Changes and Dementia, co-written by Dr. Julie Christie. Here, Houston explains how sensory changes can confuse and overwhelm people living with dementia, often affecting their ability to socialize and enjoy life.

Q  |  In your experience, are most people unaware that dementia can affect people’s senses in addition to memory?

A |  I’ve found that professionals in both the vision field and the auditory field don’t know that people with dementia can have sensory issues. The professionals and nurses in the dementia world aren’t knowledgeable about it either. That’s what made me go on this quest — I was being told by the professionals who were looking after my dementia that my sensory issues had nothing to do with dementia. But I was meeting other people with dementia and they were having similar symptoms and getting no help, so I knew that something wasn’t right.

Q  |  How do these sensory changes affect day-to-day life?

A | It’s sensory overload — the brain is being forced to make sense of too much. Crossing the road is a challenge, for example. Alongside the noisy traffic, the weather and environment make it difficult to judge the speed of traffic and I’ve been bumped by a car. Going into noisy environments like diners or cafés is difficult because the scraping of chairs on hard surfaces, the coffee percolators, and the chatter and music build up and I cannot think. These experiences were making me isolate myself and I was losing connection to family gatherings, coffee times with my gym buddies, and my ties to my neighbourhood and local community.

Q  |  Dementia always requires people to make many adjustments to their lives. What are some adjustments that are related specifically to these sensory issues?

A | I use adaptations and aids. My audiologist made me a mould for my ear — it’s like putting your hands over your ears and takes away a lot of the noise. I also got noise-cancellation headphones, which help with conversations. If I go to a restaurant, I’ll ask them if they’ve got a quiet place, and tell them why. If you’re caring for someone, phone up and ask when the quietest time is and book a quiet table. That way you’re creating a safe environment to have a family meal or a nice meal with your pal. For sensory changes related to taste and [resulting] food likes and dislikes, I keep a food diary. I try to have fun with it and when I go out for coffee, I’ll try different drinks to see if I could expand my choices. That helps me feel like I have some control over it.

Q  |  What can health-care professionals do to support people living with sensory changes?

A | Professionals need to listen to the person with dementia and discuss what action they can take so that the person can live the life they want to. I’ve been dealing with this for 13 years now, and when I started, I felt like the lone voice, but I’m not the lone voice anymore. We just need the research done to back it up — that’s the next step, research to prove that this is what we’re going through. [ ]

To learn more about sensory changes related to the dementia experience, you can access a free, downloadable copy of Talking Sense at dementiacentre.com.