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Living with dementia

These strategies can add life quality and meaning for both of you

The challenges of a dementia diagnosis can be compounded by feelings of isolation and loneliness when family and friends stop visiting because they don’t know what to say or do.

“People stay away because they don’t know how to communicate with them, but it magnifies the difficulties,” says Dr. Al Power, a medical doctor who holds the Schlegel Chair in Dementia and Aging Innovation at the University of Waterloo. “Social isolation has a variety of negative health outcomes including depression. Being isolated is bad for our health.”

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While going to a church event may be too much stimulation, a short home visit to see how they are doing may be appreciated, says Dr. Carrie McAiney, a professor at the University of Waterloo and the Schlegel Research Chair in Dementia at the University of Waterloo. Some suggestions for activities to do during the visit might include looking at farm magazines together, looking at family or vacation photos, or doing a large-piece puzzle together.

“Music holds a special place for most of us,” McAiney continues. “It can be a way to connect and bring joy even in later stages of Alzheimer’s.”

Phyllis Fehr of Hamilton, Ont., was diagnosed with early-onset Alzheimer’s disease six years ago. She says she has good days and bad days but even on her worst days she still knows in her heart what’s happening. “Even on days when I’m having a rough time getting my words out, I can still understand… still see facial expressions.”

Even as the disease progresses, you can hold the person’s hand and tell them about your favourite memories, says Fehr. She advises against asking “Remember when…?” “Chances are we don’t,” she says.

Fehr runs an online support group for those with a dementia diagnosis. “You can feel very alone. Support groups help,” she says. “We learn from each other how to cope,” she says.

Dementia is an umbrella term for an array of symptoms. Alzheimer’s disease is the most common cause of dementia, accounting for about two-thirds of dementia cases, but altogether there are about 100 different causes.

While most often associated with memory loss, Alzheimer’s actually has an impact on many forms of cognition including language, sensory perceptions, orientation (finding your way), and executive functions such as planning and problem solving, says Power. As a result, the affected individual may become anxious, angry, irritable and frustrated.

“It’s important to remember that every person is unique and every journey is unique,” emphasizes McAiney. Individual abilities will fluctuate on a day-to-day basis and they will change as the disease progresses, she says.

Try not to make assumptions about what they can and can’t do, continues McAiney. Too often all control is taken away from a person once they have a diagnosis of dementia. “Involve them in decisions where possible, such as outings and food choices. Focus on their strengths and interests. What do they like to do?”

Most of all, be patient and treat them with dignity and respect, says McAiney. She advocates a shift in the language we use. Instead of saying the person is “suffering from dementia,” McAiney says it’s better to say “living with dementia.”

Fehr agrees. The expression “suffering from dementia” is one that bothers her. “I’m having a great time,” says the former board member for Dementia Alliance International, a non-profit organization that supports those living with a dementia diagnosis. Fehr has made many presentations, as far away as Australia, about her experiences living with dementia.

Fehr acknowledges it can be very hard on caregivers. “They see the changes,” she says, adding that getting educated about the disease through the Alzheimer’s Society has helped her and her family to cope with the situation.

Power is on a mission to change the way society and the medical community views dementia. “How can we accommodate the individual’s change in perception instead of asking them to navigate our world and do things the way they used to?” he asks. “To me, that’s as crazy as asking someone in a wheelchair to walk up the stairs.”

Reducing risks on the farm

Dr. Don Voaklander, director of the Injury Prevention Centre at the University of Alberta, says older farmers are the most at-risk group on the farm. “Injury rates skyrocket for farmers after the age 60.”

A tendency for older farmers to overestimate their abilities and underestimate the danger of activities due to a decline in cognitive abilities puts them at increased risk, says Voaklander. Some seven per cent of Canadians over the age of 65 have dementia and for unknown reasons, dementia rates are higher in rural areas than in urban areas and often take longer to get diagnosed.

With a third of Canada’s farmers now over the age of 65, reducing the risk of accidental injury or death is critical. Voaklander suggests some proactive strategies to help keep older farmers safe.

Look for signs of damage to farm equipment or fence posts for indications that their ability to manoeuvre farm equipment has been hampered by mental or physical decline.

Older farmers tend to default to operating older farm equipment, so be sure this equipment is maintained in good working condition with safety guards in place, and that tractors have been retrofitted with rollover protection.

Working alone puts farmers at increased risk. Having a communication strategy in place such as carrying a cell phone or walkie-talkie and having regular check-ins can help cut that risk.

Older farmers tend to choose the tasks they will do around the farm, but more discussion with family members could help ensure the tasks are appropriate and can be completed in a safe manner. Respectful and honest conversations can help prevent a tragic accident.


Tips for communicating with those living with dementia:

  • Sit down, at eye level or slightly below. Be present, remove all distractions. Optimize the person’s comfort, hearing and vision. Make sure they have their glasses on and hearing aids in.
  • Speak clearly, enunciate words, adjust your pace to mirror the other person. Be aware of your body language.
  • Speak as to any normal adult. Don’t talk down, patronize or treat like a child.
  • Give people time to formulate responses and speak.
  • Re-phrase or ask for more detail if unsure.
  • Always validate underlying feelings; don’t try to explain them away. Say “I’m sorry you’re upset,” for example.
  • When asking questions, try to use open-ended, “opinion” questions whose answers don’t have to be right or wrong.
  • Observe the person’s tone of voice, body language and other non-verbal cues.
  • Use touch — when appropriate — to connect, comfort or refocus attention.
  • Always ask for input: “What do you think?”
  • Apologize for angry responses: “I’m sorry; I was only trying to help. What can I do differently?”
  • Support choices by providing lists, fewer choices, verbal and visual cues, etc., as needed.
  • Try to offer information to support decision-making, rather than deciding for the person.
  • Offer appreciation and thanks (honestly).

(Source: Dr. Al Power, geriatrician and Schlegel Chair in Aging and Dementia Innovation at the Schlegel — University of Waterloo Research Institute for Aging)

Resources:

Books written by those living with dementia:
– Alzheimer’s from the Inside Out by Richard H. Taylor, PhD
– Dancing with Dementia by Christine Bryden
– What the Hell Happened to my Brain? Living Beyond Dementia by Kate Swaffer

Books by Dr. Al Power:
– Dementia Beyond Disease: Enhancing Well-Being
– Dementia Beyond Drugs: Changing the Culture of Care

Documentary video on “Revolutionizing Dementia Care”. Watch it at ideastations.org/alzcare.

Alzheimer’s Society of Canada provides support and resources across Canada. Visit them at alzheimer.ca.

Dementia Alliance International, a non-profit organization that provides online support groups, education and advocacy for those living with a dementia diagnosis. Visit them at dementiaallianceinternational.org.

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