“But oh, we suffer, right? Yes, right!” So said Yente in the classic, Fiddler on the Roof! Families dealing with the Dementia journey suffer, often desperate for support. For years the challenges of getting a correct diagnosis followed by proper and helpful mechanisms and
supports for the patient, caregivers, and families has been the huge “elephant in the room” in
discussions of health care for the aging population.
With the greatest proportion of elders amongst provinces in the country and a population that has forecast its aging issues for decades, it should come as no surprise that emergency departments and hospital beds are distressed with elders in crisis.
Throughout my career I have interacted with families whose loved one has dementia-like symptoms, and in my latter years in long-term care I have heard from literally hundreds for whom the dementia journey is incredibly painful. The disease itself upsets life not only for the patient but for the spouse, the children, the grandchildren.
In the 2016 deliberations of the New Brunswick Council on Aging, the volume of information and representations regarding dementia and long-term care issues was such that the Council prioritized the creation of a provincial Dementia Strategy in addition to getting the Assessment Process overhauled. That was 7 years ago; and these issues had already been causing grief in the system for over a decade.
The Alzheimer Society has been a beacon of hope for families but regrettably often not consulted until after a firm diagnosis which often follows years of wondering, coping, adjusting. In 2017, after the Aging Council published its report, the Alzheimer Society sponsored a workshop with Dr. Linda Lee, arguably the Canadian leader in the primary care management of persons with dementia and their families.
Persons in attendance at the presentation included prominent nurse leaders, Medical Society leaders, civil servants from Health and Department of Social Development, and others for a total of about 40 people with influence in Aging Care in NB.
Dr. Lee is Professor of Family Medicine at McMaster University with affiliation in the Research Institute for Aging at University of Waterloo. In her busy family practice, she came to recognize that once diagnosed with dementia, the management of the care of such patients needs a team providing support; that the classic one-on-one doctor/patient relationship was insufficient.
Once diagnosed, the patient, caregiver and family need follow up. The caregiver is on high alert 24/7 with these persons. In the early stages not so much, but as the disease progresses, it manifests itself in many ways and no two patients can be treated the same. Since Dementia is a disease of the brain, the symptoms will include speech, interpersonal issues, wandering, behaviors that can place the household at risk and ever so much more.
Unlike persons diagnosed with other physical ailments, the care of persons with Dementia is a Team effort involving caregiver, children, often grandchildren, pharmacist, foot care, personal care, nutrition, home support, security, and more.
The Caregiver just does not have the time to be making multiple calls, multiple visits in order to find and arrange all the supports necessary to provide care and safety for the patient. And the caregiver may periodically need relief in some form. So how do you possibly get to know about all the resources in the community that could support your care for the patient and, if necessary, arrange transition to another level of care?
The family doctor’s office typically is deluged daily with questions and calls from the other hundreds of patients needing appointments and help for all manner of ailments. Expecting the family doctor or NP office to have all the current information and contacts that a caregiver and family will need in managing the care of the patient is unrealistic, as Dr. Lee has demonstrated.
She created a clinic setting for her patients with Dementia where they come to see a team, not just the doctor. Challenges with Medication? The Pharmacist is there. Problems with home support? The social worker is there to help. Problems with aids for daily living, ask the Occupational Therapist. It is a one-stop shop for persons with Dementia and their families.
From initial concept around 2015, soon there were a large number of “Linda Lee Clinics” in Ontario! Following years of development, they are now referred to as MINT Memory Clinics. For those familiar with the Dementia Journey for families, it all seems so helpful and logical.
So having unveiled it in 2017, it is gratifying to see now that in New Brunswick the past week has seen two MINT clinics initiated, one at Miramichi Hospital and one at Loch Lomond Villa in Saint John. With the enthusiasm of Chandra MacBean of the Alzheimer Society, the clinical championship of Dr. Michelle Casey, family physician, and the Innovative Spirit of Cindy Donovan, well-known leader of Loch Lomond Villa, these two clinics are bound to make a real difference.
Both MacBean and Donovan describe the Linda Lee or MINT clinics as “game-changers in the care of persons with Dementia and their families.”
The real question for those interested in health and long-term care reform is simply this: what are the forces that keep innovation from happening in this province? What are the sources of push-back and how do we either remove or educate them? Where is that Dementia Strategy that was promised in 2017?
The process of reform will be incomplete until these questions are answered. With the pace of change in this sector and the knowledge explosion, innovation must be valued and encouraged. That has not been a strength by any stretch!
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 firstname.lastname@example.org or www.kenmcgeorge.com
Ken McGeorge, BS,DHA,CHE is a career health care executive based in Fredericton, NB, Canada.