We Deserve the Mess We Have: poor Dementia score

Catherine Morrison’s account of the CanAge Report called attention to the poor performance in New Brunswick in dealing with Dementia, one of several diseases of aging that also impact many people under the age of 65!  Many of the issues causing much grief to the public and the health system stem from the inadequate manner in which care is administered and delivered to the vulnerable.

For generations, our planners have known that the aging bubble would be here now, as it is, and that with it would come all the health issues of aging:  reconstructive surgery, neurological challenges, diabetes, and ever so many more.  Dementia impacts a huge percentage of the aging population and, unlike many other illnesses, it impacts the entire family.  Suddenly the spouse is a caregiver with lifestyle entirely dictated by the symptoms and phase of the Dementia on the husband or wife.  Volumes have been written about how this disease is so life-altering for the entire family unit that it does not need further repeating here.

There are over 80 different forms of Dementia, with the most prominent being Alzheimer’s Disease.  Although some forms of Dementia are reversible, the vast majority are progressive, degenerative and irreversible.  In addition to memory loss, other symptoms include changes in behavior, personality, sleep patterns and so much more.

This has been well recognized by geriatricians, the Alzheimer’s Society, and others who play an active role in the care of persons with Dementia.  In my career in leading hospitals and long-term care facilities, I have seen this dominant disease grow from “grammie seems to have hardening of the arteries” to full blown out of control major disease that has spin-off effects on emergency departments, mental health services, doctor’s offices, social services and ever so much more.

In 2014, just following my third retirement, I had the opportunity to serve as interim CEO of the Alzheimer’s Society of NB while the CEO was on Maternity leave.  During that year, I heard many sad stories of families trying to wend their way through the maze of primary care, social services, home support, care home support, nursing homes, medications and ever so much more.  With other diseases, that is all so much more clear and straightforward; not with Dementia.

Indeed, in my treasured experience as CEO of York Care Centre, I also had the opportunity to see many times each day the harrowing effects of managing thru the maze that families experienced in caring for their loved one.  Our staff were innovative and initiated many programs that were of enormous help to families in their journey.

So when asked to address a Committee of the Canadian Senate in 2015 on the topic of Dementia Strategy, I was honored to present the need for provinces to step up and for the Federal government to lead in practical ways as inducement for provinces to recognize the need for a strategy and a plan for dealing with this disease.  Thus, was coined Dementia Strategy.

Strategy, by definition, is not a detailed plan of micro details as government needs in their books of regulations.  It is, by definition, “a plan of action or policy designed to achieve a major or overall aim.”
A Plan, on the other hand, typically refers to that next level in which details of doing and achieving are worked out and described.

So, when the New Brunswick Council on Aging published its report in January 2017, used by the Departments of Health and Social Development as the Plan for Seniors, or so I have heard them say, many were filled with anticipation as the creation of a Dementia Strategy was prioritized as a recommendation.
In May 2019 a group of interested professionals were invited to see and hear a briefing on progress on Dementia Strategy convened by the Department of Health.  It used the terms Strategy and Action Plan.  Since that time there appears to have been little or no progress and no one in the field with whom I have spoken has seen anything resembling a strategy.

Why was this a priority of the Council?  Council members, coming from medical, nursing, long term care and academic backgrounds all had heard, for years:  long delays in detecting and diagnosing the disease, many reporting 3-4 years even with a family doctor; over-medication of frail elders, often a substitute for appropriate alternate therapy; maze of required services, difficult to identify and access; access to long term care.

The CanAge Report said that in 2016, only 2 out of 5 Canadian Doctors felt well-prepared to manage community dementia care and that is born out from the many stories told to the advocacy groups by families.

The vision of the CanAge Group is that all people living with dementia should:  be diagnosed early, live free from stigma, receive the best possible care, have access to innovative healthcare solutions, live vibrant and connected lives including prevention and associated risk factors.

In 2014, Dr. Linda Lee gave a workshop in New Brunswick sponsored by the Alzheimer Society and co-funded by the New Brunswick Medical Society, to which leaders were invited from medicine, nursing, government.  Linda Lee is Professor of Family Medicine at McMaster University and in her clinical practice, discovered the issues of early diagnosis and the on-going support for patients and their families.  She created a primary care clinic that brought together a multidisciplinary team so that when patients arrived, they saw not only the doctor but had access, in the same visit, to all those additional support services so required by the families.  It is like a One Stop Shop for Dementia.  Soon, throughout Ontario, there were over 200 “Linda Lee Clinics” that make the on-going management and service for families and patients ever so much more efficient and relevant.

Thus far, New Brunswick, in the 8 years since that visit, has shown not only no interest in that model of care but in any other model such as Prime that aims to serve this vulnerable population more effectively.  Dementia is the disease in which on-going care and management are best done with a team.

The Department of Health spokesperson, in the news report, said that Health and Social Development are now re-starting the process.  Pandemic aside, two civil service departments alone cannot possibly create, in real time, a Dementia Strategy that serves the purpose needed.  They honestly need to co-opt some persons of influence in the sector who have a solid working knowledge of the issues and probable future courses of action needed.  The best place for a Strategy to start is by honestly, frankly, without fear or intimidation, describe the disease, its scope and future growth, the practical and honest expectations of any preventative methods, current deficits in detection and diagnosis, the most efficient and optimum organization of services.

A stellar team composed of Health, Social Development, and key persons of influence in the health and senior care sector need to get in the same room for as long as it takes simply to create the strategy.  With the right people, that could be done in 2-3 days, assuming they start with good data.
The plan is a different story because once the issues are clearly and honestly laid out, figuring out how to go about changing what needs changing is the next and difficult level of planning.  And, again, Health and Social Development cannot do that alone.
Ken McGeorge,BS,DHA,CHE is a retired career health care CEO, part time consultant, and columnist with Brunswick News; he is the author of Health Care Reform in New Brunswick and may be reached at [email protected] or www.kenmcgeorge.com