This week I want to share a rather personal story to encourage those of my readers who may be living with a patient suffering from dementia or any of the many related conditions.
In 2016, my wife of 45 years, Joyce, was diagnosed with frontotemporal dementia.
Dementia is not a specific disease but rather a group of conditions characterised by impairment of at least two brain functions, namely memory loss and judgement. Symptoms include forgetfulness, limited social skills and thinking abilities so impaired that it interferes with daily functioning.
The condition of dementia is the result of damage to or loss of nerve cells and their connections in the brain. Dementias are often grouped by what they have in common, such as the protein or proteins deposited in the brain or the part of the brain that is affected.
Some diseases may look like dementia, such as those caused by reaction to medications, or vitamin deficiencies, and they might improve with medication. In general, however, the condition is degenerative and while it can be managed, it cannot be cured.
In frontotemporal dementia, the frontal and temporal lobes of the brain shrink. In addition, certain substances accumulate in the brain. What causes these changes is usually unknown. There are genetic mutations that have been linked to frontotemporal dementia but, more than half of the people who develop the condition have no family history of dementia.
The most common symptoms of frontotemporal dementia involve extreme changes in behaviour and personality, including increasing inappropriate social behaviour, loss of judgement, loss of inhibition, repetitive compulsive behaviour such as tapping, clapping, increasing difficulty in using and understanding written and spoken language such as finding the right word to use in speech or naming things, and a decline in personal hygiene.
In the case of my wife Joyce, we started noticing changes in behaviour back in 2012 when her driving became erratic, and she started having difficulty in naming everyday household items.
The symptoms were mild but in 2013 we had to stop her from driving because her judgement of situations on the road was becoming dangerous to herself and other road users.
In 2014, Joyce started to complain about swelling around the lower neck and she was seen by a doctor who recommended surgery to remove a fatty lump. However, the swelling reduced on its own.
In 2015, she accompanied me to India where I was to undergo surgery and while we were there, Joyce was put through a battery of tests, and she was given a clean bill of health.
By 2016, however, we began to notice more behaviour changes and a close family friend, Lucy Thande, observed that Joyce’s symptoms were similar to what she had seen in her mother who had dementia.
Lucy referred us to a psychiatrist at Aga Khan who diagnosed Joyce with possible dementia. The psychiatrist referred us to Dr Hooker, a renowned neurologist at Aga Khan Hospital, who after tests, confirmed the diagnosis of frontotemporal dementia.
Dr Hooker invited the whole family for counselling on what to expect over the next six to 10 years and how we should respond to the patient noting that the condition was degenerative.
Of course, we were traumatised by the news, and we determined to do our very best to look after Joyce.
The reason I decided to share this story is that three weeks ago we took Joyce for review at Dr Hooker’s clinic, and he was amazed that after six years she was doing relatively well and has not become totally dependent.
She is still able to bathe, dress, feed, and take herself to the bathroom. Needless to say, notwithstanding, we had to engage a full-time nurse to supervise Joyce four years ago.
Over the years since the condition was diagnosed, we have received numerous solicitations from people who claim to have all manner of cures and concoctions, offer of divine interventions from men of the cloth, all at a “reasonable fee.” But I can assure you none of them has lived up to their claims.
What I have found most effective is to give love and quality time to the patient. Diet, regular exercise, adequate sleep, and the odd trip out of town have proved to be invaluable.
Joyce walks about eight to 10 kilometres every day, weather-permitting, of course in the company of the nurse. We have been able to maintain her weight within the ideal figure of 70 kilorammes and that really helps many other functions.
While Joyce still remembers me, she has forgotten all of her friends and relatives. She really struggles to remember her own children by name, but she remembers who they are and has many amazing recollections of them when they were young. Her long-term memory comes back with awesome detail.
I would like to encourage those who may be going through the experience of the dementia group of conditions to take heart. Give your patients freely of your love, be there for them physically, and walk with them in this journey. You are their world.