Living with dementia on the farm

Getting a diagnosis of Alzheimer’s can be devastating, especially for farmers who want to stay active on the farm. Even if you’re afraid of bad news, however, it’s important to seek a medical diagnosis as quickly as possible.

Memory loss or problems with cognitive function may be caused by treatable conditions, explains Lisa Loiselle, the associate director of research at the University of Waterloo’s Murray Alzheimer’s Research and Education Program (MAREP). Such conditions can include vitamin deficiencies, stress, depression, anxiety or alcohol abuse.

The sooner you get checked out by your doctor after you start experiencing symptoms, the sooner you can get the right care.

There are also medications that can slow the progression of dementia but, again, these need to be started early, says Dr. Debra Morgan, professor at the Saskatoon-based Canadian Centre for Health and Safety in Agriculture.

Early diagnosis also makes it possible to make plans for the future while the person affected by dementia can still participate in the decision-making process. Some of the arrangements to be considered include transfer of farm management and assets, updating wills and powers of attorney for property and health care, and planning for medical care and living accommodations.

Horse farmer Bill Heibein was working as an accountant in the Thunder Bay area when he was first diagnosed 15 years ago with early onset Alzheimer’s disease at the age of 59. He took early retirement from his accounting job right away but has remained active on the farm since his diagnosis. Now 74, he still keeps horses on the farm and only stopped training and showing his quarter horses a few years ago.

“Getting a diagnosis can feel like a kick in the teeth,” says Heibein, “but putting off seeing a doctor is one of the worst things you can do.” Getting educated can help you and your caregivers cope, he says. He recommends contacting the Alzheimer’s Society, which has a wealth of useful information.

Heibein says that reducing his stress level by retiring from his accounting job was a good move. He also thinks that remaining active on the farm where he performs repetitive tasks has also been good for him. Heibein heats with wood and gets lots of exercise cutting firewood. For many years he has played in a Dixieland band which performs at area senior’s centres. “Playing a musical instrument is good for the brain,” he says.

Heibein has developed systems that help him cope with his short-term memory loss. He uses a large calendar and prompts on his Blackberry smartphone to keep him on track. He also uses a GPS navigation system in his truck to keep him from getting lost when driving. Heibein is also active on various Alzheimer’s Society committees and is involved in a research program at Lakehead University in Thunder Bay.

“It’s important to stay involved,” says Heibein, who was upfront with friends and family about his diagnosis. “I’ve been fortunate that people have treated me the same,” says Heibein, who acknowledges that stigma can be a big problem for those suffering from dementia.

Heilbein also points to the support of his wife of 52 years, Heather, and he says a local support group keeps him up to date on research developments and helps him to not feel alone.

Like Heibein, Loiselle says it’s important to reduce your stress level if you’re suffering from dementia. “Slow down, take your time,” she says. “Frustration makes confusion worse and increases the risk of an accident happening.”

Older farmers are already at a much higher risk of having an accident on the farm. One study shows farmers aged 70 to 79 are four times more likely to be killed in an accident on the farm than 30- to 39-year-olds, and it stands to reason that dementia would only make that worse, says Morgan.

While continuing to work on the farm can help those afflicted with cognitive problems to feel useful and valued, families need to be aware of the person’s limitations. Unfortunately, there aren’t any guidelines to help family members make those judgment calls, says Morgan. What is safe changes day by day, she continues. “Dementia is progressive and it’s hard to predict how the disease will unfold.”

Loiselle has other advice for people diagnosed with dementia. It’s important both for those experiencing dementia and for their caregivers to let others know what they need. “Communication is absolutely essential,” she says. Other strategies help too: try to stay positive, keep doing the things that interest you, rest when needed, stick to a routine, and don’t be ashamed.

Family and friends should learn about the disease so they will be more accepting and sensitive to the needs of the person with dementia, continues Loiselle. Too often those with dementia and their caregivers become isolated, she explains. Family and friends can also offer respite care. The primary caregiver may need a break from time to time.

Loiselle also urges family members to include the person with dementia in the decision-making process. “It’s dehumanizing to exclude them,” she says.

Finally, make sure you give yourself enough time to process the diagnosis before making any decisions. Heibein agrees. He’s glad he made the decision to rebreed their mares, figuring they would be worth more in foal. “It was a good decision,” he says since he was then able to continue training and showing horses for several more years.

Unfortunately, it can be tough to get access to specialists in rural areas. After a successful five-year pilot project, Saskatchewan’s Rural and Remote Memory Clinic in Saskatoon has become a one-stop interdisciplinary clinic for those suffering from dementia. The clinic is particularly good at diagnosing the less common and more complex forms of dementia, says Morgan, the clinic’s director.

About 65 per cent of dementia cases are the result of Alzheimer’s disease, but altogether there are 100 different causes of dementia, says Loiselle. Since there is no one test for dementia, patients see all of the necessary doctors and have the necessary tests in one day at the Saskatoon Clinic. By the end of the day, patients have a diagnosis instead of spending months travelling to various doctors and hospitals for tests, says Morgan. Patients also receive ongoing followup support through both video conferencing and in-person appointments at the clinic.

As Canada’s population ages, and the average age of farmers continues to climb, the number of farmers with dementia will increase. Today, three-quarters of a million Canadians are living with dementia but in 15 years, that number is expected to double to 1.4 million.

Resources

Alzheimer’s Society of Canada (also has many local chapters across the country)
Murray Alzheimer’s Research and Education Program (MAREP), University of Waterloo

Kate Swaffer is a person living with Early Onset Alzheimer’s Disease. She is committed to meaningful dialogue with a wide range of stakeholders about the critical issues impacting a person living with a diagnosis of dementia and their loved ones. Check out her blog here: kateswaffer.com
In Saskatchewan, the Rural Dementia Care Centre