Joan Craven's Blog

According to the World Health Organization (WHO) there are over 55 million people living with dementia. In 75% of the cases family caregivers are providing support. It is estimated that family caregivers save governments billions of dollars and some studies say between 24-31 billion.

Unfortunately there is little support for caregivers and in many cases the caregivers develop health issues as a result of the physical work and the financial and mental strain. Many times the caregivers pass-away before the person they are caring for.

It’s important to note that some people have dementia-like symptoms caused by things like untreated sleep apnea, depression, certain thyroid issues or excessive alcohol consumption. The difference is with treatment, these conditions may be reversed.

Alzheimers is the most common form of dementia. Therefore it’s important to become educated.

The following two books are excellent places to begin your understanding of this brain disease that is on the rise world-wide.

Four Umbrellas by June Hutton and Tony Wanless takes us through the frustrating seven-year journey to diagnosis. It is interesting because Tony, who has early on-set Alzheimers, is able to write how he is feeling. We see how someone with Alzheimers processes things and views his world. June, his wife, gives the perspective from the caregiver’s point of view.

Because Tony is a writer and constantly works with words he continually scored well on the Montreal Cognitive Assessment Test for Dementia (MoCA). This is often the first test physicians give if the patient or the family member express concerns about memory.

His wife said if he had been given an MRI and a full day of memory testing they would have been diagnoses years sooner. These tests are much more accurate in assessing people.

Her advice is if you see something push for not only a MoCa or Mini-Cog, ask that an MRI and full day memory test be ordered. The MRI can be a baseline for changes that may occur over the years. While doctors may say this is costly, the price to the medical system, both for the person and the caregiver, without a diagnosis eventually becomes much more costly.

An early diagnosis would have seen June and Tony doing financial planning, and alerting friends, colleagues and family that behaviour changes were due to Alzheimers. Many relationships are severed because people don’t understand why someone with Alzheimers is acting in peculiar ways. Also for the person who has Alzheimers a diagnosis assists them understand why they have this brain fogginess and why their brain is not functioning as it once did.

Often people in the early stages can ‘rise to the occasion’ when at the doctors, at friends or even at work. Only the caregiver who spends extended periods of times sees at first the subtle, and later the startling changes. For Tony it took years for a diagnosis and only happened because on one visit to his physician he exhibited what June called Alzheimers rage at a question that was asked.

June’s advice is that caregivers speak up at medical appointments, document and If you feel your concerns are being ignored seek a second opinion. Email the doctor before hand so your specific concerns can be addressed.

As with any medical condition, it’s important to understand memory loss and Four Umbrellas can assist.

Neither Married Nor Single written by Dr. David Kirkpatrick, a geriatric psychiatrist, poignantly shares a husband as well as a medical perspective on dealing with a spouse who has Alzheimers. Even as a doctor, he had difficulty getting a diagnosis for his wife and faced many of the same challenges others did.

He too stressed early diagnosis as it gives the person as well as the caregiver time to plan, an opportunity to understand the symptoms, to look at treatment options, develop support networks and maximize quality of life. He says the diagnosis was a combination of grief and relief.

HIs book includes vignettes from others who have faced a dementia or Alzheimers diagnosis. I found them enlightening and helpful to learn that this disease is as unique as the person who has it.

Many people in the early stage of memory loss lose their function to plan, organize and then carry out a process – even something like dressing, eating or perhaps washing dirty dishes.

Others make up stories, especially when it comes to sexual affairs. While many accuse their partner of having affairs, this author’s wife was concerned she was having an affair. “What would David think?” was her worry when they became intimate or were going somewhere together. The authors advice was don’t argue, it’s better to use distraction methods.

Dr. Kirkpatrick advises caregivers to think about their own health and mental state. Most often the caregiver doesn’t look after themselves and many develop depression. Physical aliments manifest themselves as caregivers don’t get a solid night’s sleep. Also loneliness comes into play because caregivers withdraw from their support systems because they are overwhelmed as they take on more responsibility around the house (financial, planning meals, car maintenance) and for looking after and caring for their spouse.

The writers were quick to point out that love still thrives, although different, even when a partner’s memory is slowly eroded. How one handles the diagnosis is a personal journey.

Both books help us understand what is happening to the person who is dealing with memory loss as well as what is happening to the caregiver.