MY JOURNEY WITH A LOVED ONE WITH DEMENTIA

Dr Chandrakant Shah, standing, centre, with his support team: his neighbours Wayne and Devi, his sons Rajiv and Sunil, granddaughter Neha and wife Sudha (sitting).

By CHANDRAKANT SHAH, MD

I read an interesting article by Navjot Gill titled How do you say dementia in Punjabi? in the March issue of Desi News.

It can be challenging to explain dementia to people who are not familiar with it, whether they are Punjabi, Gujarati, Sri Lankan, or Pakistani.

Almost 600,000 Canadians are suffering from dementia and the number will keep rising.

Although there is a lot of information available about dementia on the internet, many of your friends, relatives, care workers and casual acquaintances may not access it. Thus, it is up to you to explain it to them, and I would like to share my experience.

I am an 88-year-old retired physician – South Asian and originally from India – and have been caring for my spouse with dementia for the past eighteen months. We have been married for 58 years and have lived in Canada all our married life. My wife was diagnosed with dementia following a stroke.

What is dementia?

The National Institute on Ageing in the US defines dementia as a severe decline in cognitive functions, such as thinking, reasoning, and remembering, to the extent that it interferes with the person’s daily life.

Dementia is a disease that affects the brain, much like diabetes, heart disease, etc. Depending on which part of the brain is affected, different cognitive functions such as mental processes involved in the acquisition of knowledge, manipulation of information, and reasoning are affected resulting in loss of memory, learning, attention, decision making, and language abilities.

The human brain is comparable to a computer that processes all the information it receives and stores it temporarily or permanently in specific areas of the brain and recalls it and acts when necessary.

Some responses are voluntary, while others are involuntary.

For example, when someone calls your name, you respond – or not – voluntarily, while you automatically try to swat a fly that sits on your arm.

Various areas of the brain, such as those responsible for speech, mood, etc., are interconnected by special pathways or connectors.

In dementia, these centers and pathways are damaged, resulting in different functions being affected. Behavioural symptoms in dementia are due to brain damage, and not psychological or mental illness.

I use a simple analogy to explain the symptoms of dementia: The internet in the brain is not working, and hence there are no responses or inappropriate responses, which is like when wi-fi is not working on a computer, and the screen displays a circle going round and round.

How did I initially respond?

Dementia symptoms usually start gradually and temporarily, such as memory loss, and as the disease progresses, there are more cognitive, behavioural, and emotional symptoms.

After her stroke, my wife began exhibiting early symptoms of dementia, such as memory loss, agitation, and confusion. Within three months, we were told that she had dementia.

Even with my medical education and experience, I found myself telling my friends and family members that she had become forgetful and was losing her memory due to old age.

I couldn’t bring myself to tell them she had been suffering from dementia for almost nine months.

Was it because the word “dementia” meant “psychological trouble” to the average person, or was I unable to accept the diagnosis, or both?

Over the past year, I have been open about her diagnosis, and when people ask about her status, I say that the internet in her brain is not working from time to time, causing her to be confused, unable to speak coherently, unable to control her emotions, and she may say inappropriate things.

Most individuals with dementia in the early and middle stages of the disease can be looked after at home with appropriate support from community agencies such as home and community services of the Ministry of Health; daycare programs, friendly visitors’ program, hiring private personal care workers (PSWs) or by family members. There are many private agencies that are in the business of providing PSWs and other services that are not covered by the government.

In the later stages, when one is unable to manage an individual at home, a private nursing home or government-funded long-term care facility may be the solution.

However, in these facilities, the availability of culturally-appropriate food is a big issue as they cater mainly to the Western diet. People with dementia tend to revert to their first language which may not be English for South Asians, and this can create communication problems with the care provider. With an increasing number of South Asian persons with dementia, though, I have noticed a palpable change in these institutions.

I also had to rewire my responses.

I had to sit and reflect on the changing situation and adjust my behaviour accordingly.

First and foremost, I had to learn not to get upset with my wife’s loss of memory, inability to communicate, etc.

I had to learn to have a lot of patience and empathy to understand her needs, emotions and behaviour. As a physician, I was fortunate to have done a fair amount of work on empathy in my early seventies, developing and delivering culturally safe healthcare programs for Indigenous People. I end up teaching the PSWs coming to help my wife and making it clear to them she does not need pity or compassion, she needs empathy.

With dementia, as the disease progresses, a person wanders and wants to get out of home and if they can, they will walk away even in the middle of the night.

It is important to have safety locks on all doors leading to the outside. For such behaviour and other activities of daily living such as bathing, all provinces provide PSWs and other services including a respite care worker.

The home healthcare coordinator provided by your province is a pivotal person to guide, access and facilitate your care plan.

Similarly, having a good relationship with your family physician or geriatrician is essential to help get needed medications for abnormal behaviour, needed referrals or filling out forms for disability tax credit.

Social support from family, friends and neighbours is extremely important.

I am very fortunate to have unconditional support from my sons Sunil and Rajiv and neighbours Devi and Wayne, who are my lifelines when emergencies happen or when I need to vent my frustrations. The circle of our close friends and acquaintances provides us with needed social support through their visits and caring phone calls. Do not shun your family or friends; ask for help when needed.

I had to learn about the numerous voluntary (government and non-government) and for-profit organizations available for support and use them appropriately.

As an elderly caregiver who has health issues, one may wonder how I am coping.

Am I stressed out or burnt out which is common amongst care givers? Do I feel lonely? Fortunately, being raised in the Indian philosophy of karma and believing in fulfilling one’s duty (dharma), I handle my downs easily and count my blessings.

As a caregiver, I look after my mental, physical, emotional and spiritual health which is very essential. As the title suggests, I am on a journey, not knowing where it will lead. But having faith, and a strong family and community support, it is not going to be difficult one.

In summary, dementia is a complex disease affecting the brain and its cognitive functions; it is a progressive disease and affects mainly the elderly population.

Individuals suffering from it need support from family, friends, voluntary agencies and the healthcare system.

The primary caregiver at home also needs spiritual, psychological, social and family support.

Please do not hesitate to ask for it. It is the only way you will be able to look after your loved one with dementia at home.

Please access the Alzheimer Society of Canada website to learn about dementia and the types of help available for individuals with dementia and their caregivers.

The landmark study of dementia is an excellent document to learn about dementia in Canada.

SENIOR MOMENT

MY JOURNEY WITH A LOVED ONE WITH DEMENTIA