"I Have Dementia. This Is What It's Like For Us..." - Hope 103.2

“I Have Dementia. This Is What It’s Like For Us…”

Agnes Houston gives unique insights into the sensory challenges that come with dementia, at HammondCare’s International Dementia Conference in Sydney.

By Clare BruceThursday 16 Jun 2016Health and WellbeingReading Time: 4 minutes

Listen: Agnes Houston chats about her experience of dementia. (Image: Betterlife)

When Agnes Houston takes to the stage at HammondCare’s International Dementia Conference in Sydney today, she’ll have more than just public speaking nerves to overcome.

As a person living with dementia, she’ll also have to overcome confusion and sensory overload created by the noise, bright lights and activity that go hand in hand with a conference crowd.

But Agnes is keen to face the challenge, because as a guest speaker, she’ll be bringing attention to one of the greatest yet most overlooked aspects of dementia: sensory challenges. Agnes has dementia of the Alzheimer’s type, diagnosed 10 years ago. In an interview with Hope 103.2, she said impairments to the five senses were one of the most life-impacting symptoms that people with dementia have to face—yet they’re often underestimated by doctors and experts.

“Everybody when they hear someone has dementia will say, ‘Do they remember you? do they forget how to dress?’” she said. “But after I was diagnosed 10 years ago, I found that dementia was about more than memory. The biggest challenges I had were sensory.”

The Daily Challenges People With Dementia Face

Senior woman out shopping with carer

Above: Shopping can become a confusing task for someone with dementia

Agnes still has a good quality of life, but tackles challenges to her hearing and vision every day.

“I have difficulty crossing the road with sensory overload, judging the speed and the distance of cars, and I frequently get bumped by cars,” she said. “Recently I was told I was not safe to cross the road on my own. I need assisted travel. I have neurological vision impairment and have been put on the partially-sighted list, and I use a white stick.

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“And [there’s] the noises you experience in day-to-day living. When you go to a restaurant for a meal, there is the noise of the waiters, they play music, there are crash [noises] and people are enjoying themselves so they talk louder. I’ve had to learn some tips and strategies in order to be able to go for a meal and enjoy everyday activities, and also know when it’s too much and when to withdraw.”

Some of the strategies Agnes uses when she goes out include sitting with her back to a wall or at the end of a table to reduce noise, concentrating on one person’s conversation and blocking out other sounds, and when necessary, taking a break.

An Overwhelming Experience That Inspired A New Booklet

Dementia & Sensory Challenges

Given Agnes’s difficulties with too much sensory information, one can only imagine what it might have been like for her to arrive in Sydney this week in the middle of Vivid, a festival of ‘Light, Music and Ideas’.

She said the sensory overload of the lights, noise and crowds was “overwhelming”.

In fact it was one such overwhelming sensory experience – ironically, at a dementia conference – where Agnes first realised that the healthcare industry needed to pay more attention to the sensory needs of people with dementia.

“I was at a conference, one of the worst places for a person with dementia because of the sensory overload, the hype and crowd,” she said. “There were about 35 of us with dementia and we were all at the back of the room, really quite disturbed, and we were thinking, ‘why in this conference is nobody talking about the sensory issues? So I said, ‘we’ll go and find funds and write it ourselves’.”

Together she and her friends created a booklet and DVD called Dementia & Sensory Challenges: Dementia can be more than memory. It lists some of the impairments and changes that people with dementia experience to each of the five senses, as well as strategies that help.

Common Sensory Challenges That Come With Dementia

People living with dementia may experience some of the following:

  • Double vision or ‘ghosting’ while watching television or shopping
  • Being confused or frightened by reflections
  • Letters on computer keyboards ‘jumping’ around
  • Mistaking a black mat for a hole in the ground
  • Tripping over steps
  • Getting agitated or distressed by music or crowd noise
  • Injuring themselves due to not feeling heat properly
  • Loss of taste and smell
  • Hearing or smelling things that aren’t there
  • Hallucinations

They may find the following helpful:

  • Being allowed extra time to process what someone is saying
  • Plain backgrounds – particularly floor coverings
  • Lighting that is both bright and even, to reduce shadows
  • Having quiet time to recovery from a busy activity
  • Ear plugs to reduce noise
  • Talking books in place of reading
  • Distraction techniques to help a person suffering hallucinations
  • Reassurance
  • Avoid trying to convince a person with dementia that they are mistaken

An MBE At Buckingham Palace

Agnes is one of the many people now being diagnosed earlier in life, who have time to live a good quality of life, and can still use their skills to make a difference. For her efforts she was made an MBE (Member of the Most Excellent Order of the British Empire) in the Queen’s Birthday Honours at Buckingham Palace.

She laughed about the experience of being notified about the award.

“You get a letter and you have to keep it secret,” she said. “Imagine asking anybody with dementia not to say anything! So my daughter Donna immediately hid the letter, and then I forgot about it until it was nearly time.”

Agnes takes a very positive view of her condition and encourages others who are living with dementia with the adage, “This, too, will pass.”