In early February, as part of their ongoing series on dementia, Mary Ann Sturdy and Pete Drewcock sat down with Dr. Jonathan Fine to get his views on dementia care in Quesnel from someone very close to the subject.
Dr. Fine specializes in geriatric care here in Quesnel, and has been caring for dementia patients for years as part of his practice.
We are extremely grateful that he found the time in his busy day to answer our list of questions.
Dr. Jonathan Fine is the medical lead of the Geriatric Assessment Team in Quesnel. He is a general practitioner of many years’ practice in Quesnel who has chosen to focus on geriatric medicine. Max, his ever-present companion, brings smiles and cheer to Dr. Fine’s patients.
Approximately how many people diagnosed with dementia currently reside in Quesnel?
I can’t tell you for sure but one can estimate. The figure for Alzheimer’s disease overall is about seven per cent of the population over the age of 60, so if Quesnel has 5,000 people over the age of 60 and if you do the math on that, it comes out to about 350. Now, that’s Alzheimer’s disease and doesn’t include the other forms of dementia. You could probably safely double that number. There are a lot of people living with dementia who don’t realize they are living with this. The problem with a disease like Alzheimer’s in particular is that people living with it don’t realize they’ve got it. That’s actually one of the diagnostic criteria of Alzheimer’s is that you don’t know that you have it.
How is a diagnosis of dementia arrived at? Is it a 100 per cent accurate diagnosis?
It is derived by a simple process of listening to caregivers and family members and also we have some standardized tests which give us a picture of a person’s cognitive abilities. We generally do those tests and we have a pretty good picture of what a person’s abilities are, and we can use those to follow longitudinally what a person is doing. Is it a 100 per cent accurate diagnosis? No. The only way, really, until fairly recently to diagnose Alzheimer’s was post-mortem. Now, there are some sophisticated tests that involve spinal taps and other new procedures. In this community, diagnosis is usually done on clinical grounds.
CT scans don’t help you with the diagnosis of Alzheimer’s, but can help you with the diagnosis of vascular dementia. The only change you see of Alzheimer’s on the CT scan is just a general shrinkage of the brain. That doesn’t mean you have Alzheimer’s disease because all our brains shrink a little as we grow older, so it isn’t diagnostic. But you can often see signs of poor blood circulation to the brain and sometimes mini-strokes. These mini-strokes are called multi-infarcts and can be as tiny as one millimeter. Depending on what part of the brain is affected, they can have profound effects.
Do you ever need a second opinion?
I certainly need a second opinion on occasion because sometimes we don’t know what kind of dementia it is or whether it is a psychological condition that could be mimicking dementia. So yes, a second opinion is sometimes needed.
Does it make a difference what kind of dementia a person has?
It does make a difference for treatment. In Alzheimer’s disease, there is a lack of a certain chemical in your brain – one of the transmitters. Sometimes we can increase the level of that chemical and can hope to slow the process of Alzheimer’s disease. That deficiency does not occur in vascular dementia, but we will often put people on one of the anti-Alzheimer’s drugs because very commonly the two often co-exist. It is not uncommon for a person to have a bit of vascular dementia and a bit of Alzheimer’s, which is why when you listen to all the recommendations about prevention of Alzheimer’s disease, you’ll notice they are very similar to the recommendations for prevention of heart attack or stroke. They focus on improving blood flow or at least preventing the deterioration of blood flow.
How is it determined when someone requires long term care?
That’s something decided on with an assessment by the Long Term Care Case Managers. This assessment determines whether the person meets long term care criteria.
Occasionally an exception may be made such as a high degree of physical frailty for example, but it’s a standardized process and not up to the doctor. People often think that the doctor has something to do with it but in actual fact, no.
What are the options besides Dunrovin for long-term care?
No option but Dunrovin in this community. When you are selected for long term care, you have the option to nominate any community in the province. Sometimes when your family is somewhere else, you can request to be put into long term care in the facility where your family is.
We sometimes have patients coming into Dunrovin from the Lower Mainland or other parts of the province because their families are here and they want to be closer to relatives.
Within the community, there is home support which allows care-workers to come in to a maximum of four times per day. This provides help with feeding, dressing, medications and checking whether that person is all right.
There are obviously long periods in between visits when that person is on their own. There are alternatives which provide support but not to the level of Dunrovin.
We have a “step-down” called assisted living, Maeford Place, where residents have their own suites and can cook for themselves if they wish. Similarly, there is a private facility in Red Bluff called Wildwood which also provides that level of service. Another service available in the community is Abbot Heights which is a step-down further. Residents can look after themselves – more like a room and board facility. Residents need to be independent in terms of being able to look after themselves. Meals and accommodation are provided. But there is no nursing intervention.
As well as support from Home Support, there are private agencies in town which will organize support workers to come in on a daily basis.
There is an occupational therapist who provides assessment and modifications around safety in the home so that clients who are at risk can have these physical risks mitigated.
Approximately how many dementia patients are in long term care in Quesnel currently?
Dunrovin has 117 beds but not all of them are dementia patients.
Without looking at a list, I would
guess 80 or 90 have some degree of dementia.
What types of dementias are most often encountered here in Quesnel? Is it similar to the national statistic?
Similar to the national statistic. There are world-wide regional variations. It’s lowest in sub-Saharan Africa and highest in North America. We are looking at incidence, not prevalence, so this is independent of life expectancy.
We don’t know the reason: maybe our life style. There’s a suggestion now that it may be related to types of bacteria in our gut.
This includes vulnerability to Alzheimer’s disease allowing more toxins into our system. There is still a lot of work to be done on this.
Do people die from dementia or from complications arising from the disease? Approximately how many die with dementia each year in Quesnel?
Yes they do. Statistics Canada’s figures from 2011 say 10.8 per 100,000 deaths. That figure can be misleading because often people with dementia die from something else. Often the ultimate cause of death is pneumonia so the statistics are not very reliable since dementia is the secondary factor.
It very much depends on the attending physician – what he puts down as the cause of death. But Alzheimer’s does kill people because eventually the brain loses the function to maintain life support processes in the body. Commonly you see swallowing difficulties, mobility differences; the patient becomes bedridden and that can lead to a whole raft of other diseases; bed sores and skin breakdown; lowered immunity. People with dementia often forget about eating and not enough is ingested to maintain adequate nutrition.
So to sum up, yes, people definitely die from dementia but it is difficult to say how many since the statistics are not very reliable.
It is something that needs to be discussed between the family and the physicians. It’s a collaborative thing. People should discuss with their families just what their needs are at the end of their lives, just in case we are not able to express them ourselves. We have within the provincial legislative framework Representation Agreements. We can designate somebody who would represent the patient if they are not able to represent themselves and they can make decisions regarding whether to provide treatment or withhold treatment when it is recognized to be futile.
Also there is a form called Medical Order for Scope of Treatment (MOST), so that there is something that you can use to discuss with your family physician. If an ambulance is called in the middle of the night, you can have something on file which is an indication of what your wishes would be – whether you want cardiac resuscitation, or whether you want to be put on a ventilator – that sort of thing.
You can decide on these things
ahead of time and it’s something we encourage families of residents at Dunrovin to do.
The issue of side effects is a huge one. I think the answer to this one could be “there are no good drugs.” When you are looking at drugs particularly in the elderly who are way more prone to developing side effects than the young, healthy population, you really have to decide what benefits they are going to get out of it and whether this is worth the side effects. There is a big debate now about the medications that were originally designed for treating schizophrenia but are fairly widely used for treating behavioural problems in dementia. It is recognized that these medications can have significant side effects and can negatively impact on the quality of life of the person who is receiving them.
If the person is distressed, these medications can play a role, but perhaps there are other ways to deal with that distress. It is becoming increasingly recognized that the knee jerk response to when somebody is distressed which is to give them pills is being challenged and if somebody is distressed, we need to know why they are distressed and what we can do about it in a non-pharmacological way. We are in the process of introducing an assessment process which will look at some of the ways to avoid using drugs.
Knowing that some dementia patients can become violent or a danger to themselves, are chemical or physical restraints still used? Under what circumstances?
Yes, we still use them and again, it’s the same thing. Tying somebody into a chair is not always the best thing to do if they are distressed because they may become more distressed. If you have a toddler who is crying, you don’t tie them into a crib! It’s a judgement call and again, this is an area where the family and the physician and the facility have to have a discussion as to what their personal feelings are on that. Generally, Dunrovin has a no-restraint policy. Any restraint has to be on the physician’s order in consultation.
From your perspective, what are the ethics behind prolonging a dementia patient’s life through medications?
There isn’t really a way of prolonging. We can treat medical conditions but again it comes into this question of what would that person want? Yes, you can send them to hospital but is that what they really want? There is a lot we can do in the facility in terms of nursing care and antibiotics and medical care without the high-tech stuff you would get in a hospital so again, the prolonging of life is an ethical question to which there is no simple answer.
There is nothing out there that will stop dementia. At a certain point we can withdraw the so-called memory pills because they are no longer beneficial.
Do you get involved in determining if a dementia sufferer should lose their driver’s license?
The physician does not get involved in taking away a license. That is the responsibility of the Superintendent of Motor Vehicles. The physician advises the Superintendent of a medical condition which could impair that person’s ability to drive.
From your perspective, what have you observed to be the most common challenge for dementia sufferers/ caregivers/nursing staff?
Understanding what is happening. Somebody that you’ve known and loved for 30 or 40 years and then that person changes is a very difficult challenge to come to grips with for both the dementia sufferer and the caregiver. For nursing staff, it’s really handling dementia patients who don’t understand what is happening.
Once I was at a lecture and a professor of geriatrics asked the audience, How many of you are staying in a hotel? Maybe about 300 people put up their hand. It’s a bit strange, isn’t it, the professor continued. You wake up in the middle of the night and you aren’t sure where you are. This is an unfamiliar room. And then somebody comes into the room and tries to remove your underwear! What are you going to do?
That’s exactly the situation when a care nurse comes into a room trying to provide care for a dementia patient! Of course, the patient doesn’t realize what’s going on. They don’t know where they’re at and then a total stranger comes at them trying to take their pants off!
I thought that was a beautiful analogy and I think that crystallizes the situation.
What is your biggest challenge as a dementia physician here in Quesnel?
Lack of resources to provide adequate care to dementia sufferers. Many dementia patients wait in hospitals for extended times because they’ve exhausted the community resources and there’s really nowhere for them to go. They’re waiting for facility care or waiting for assisted living.
The most rewarding part of my job is helping the families deal with this very difficult process and working with someone for what can sometimes be a very prolonged illness. From onset to death can sometimes be 15 years. It can be very trying for the families.
Pete Drewcock and Mary Ann Sturdy are both caregivers of partners suffering with dementia. They are contributing their perspectives of dementia and how it is affecting them as caregivers and the community as a whole, in hopes that the community will come to a better understanding of what it is like to live with this devastating disease and care for a loved one who is suffering with it. They also hope to provide information and support to those seeking answers to their questions on this terrible subject that no-one wants to talk about.
For more information, visit www.alzheimer.ca/en/bc or phone Leanne Jones at 1-866-564-7533.
The Alzheimers Society of B.C. hosts a Caregivers Support Group once a month. If you are caring for a friend or family member with dementia, call Leanne Jones at 1-866-564-7533 or Pete Drewcock at 250-991-0058.