The World Health Organization (WHO) estimated that around 55 million people worldwide were living with dementia in 2023. The prevalence of dementia globally has been a significant concern and is expected to rise with an aging population. Every year, there are an additional 10 million new cases . Alzheimer’s disease is the most common cause of dementia, accounting for more than 50-60% of cases. The World Health Organization reports, family members and friends provide an estimated 5 hours of direct care and supervision daily , and I suspect this number is higher in reality.

There is a need for increased, education at diagnosis on dementia within the medical and care partner communities. The National Council of Dementia Minds, an organization that has within its membership, doctors who are now living with dementia, has reported they wish they had known more about dementia when they delivered the dementia diagnosis to their patients.

The Role of Diagnosis in Dementia:

Many individuals are afraid of a diagnosis of dementia. Many doctors will not use the word Dementia in discussions with their patients, opting for terms such as “brain change”, “white matter disease” or neurocognitive disorder etc. Whatever term is used, it is important to receive a diagnosis as early as possible.

Early diagnosis can help individuals and families plan and prepare for the future. It can also provide some validation of cognitive concerns that may have been noticed by the individual or family members and friends. Talking about being diagnosed with dementia at the age of 50, Norman McNamara (known as Norrms) says on his YouTube video:

“Being diagnosed with something like this absolutely devastates you, but for me diagnosis – and this is going to sound really strange – was probably the best news I had at the time. Because… I thought I was losing my mind. I thought there was a conspiracy against me. I was right and everybody else was wrong.

An early diagnosis of dementia is so, so very important. Since I was diagnosed, I knew what I was up against. As they say: know your enemy. If I hadn’t been diagnosed early and I hadn’t been seen by consultants on a regular basis, I wouldn’t be as well as I am today. I don’t know what my future holds, but at least I’m prepared for it.”

With a diagnosis, people gain access to resources, support and relevant information that can make a difference in lives and improve quality of life. When you know what is happening, it can help to put affairs in order, and to make plans to address challenges in the future.

Knowledge and education allow you to continue to live life with an understanding of why changes are happening. This knowledge can help you and those you interact with, ride the wave of life with understanding and increased compassion.

Lack of Support Beyond Resources:

Once a diagnosis is received, many leave the doctor’s office in shock and saying “what now”. There may be a period of grief and sadness as the truth is accepted. Generally, a list of resources is provided to the family and quarterly or annual follow up appointments are established with the neurologist or primary care physician in a year or 6 months.

Marti, a care partner, shared that following the diagnosis, she and her husband would go to the neurologist for 3-month checkups. At each of these appointments, vitals would be taken (Blood pressure, heart rate, oxygen etc), and body weight. Medical staff would talk to her husband and he would say everything was “fine”. As a care partner, Marti would share her frustrations in the clinic hallway, or write notes telling them what challenges she was encountering. Sharing this information “in front of [her husband] would have made him angry.” Depending on the medical provider, she might receive supportive words. But one medical provider commented “What do you want? This is what he has, there is nothing we can do”. She stopped going after that.

Positive Approach to Care, one organization that teaches skills to provide care to those living with Dementia, reports 4 out of 5 families will fall apart due to a lack of positive approach to care and communication.

The Cancer Navigator Model:

According to the American Cancer Society, a cancer navigator can help with practical, physical, social and emotional needs as the individual and family navigate a way for treatment and management of their cancer. Many times, the cancer navigator becomes a friend of the family and is an emotional support for all involved in the circle of support.

Cancer navigators may help with financial barriers, communicate with providers, arrange transportation resources and so much more. There is a recognition that cancer navigators add value to the process and improve quality of life.
Leslie, a spouse of a person living with cancer shared:

“…when we spent 10 days at MD Anderson, it was very helpful. They answered any question, helped us truly navigate some of the non-medical questions, helped understand the structure of the system and mostly what to expect. Also helped with giving directions.”

A diagnosis of cancer can cause reflection on life and prompt individuals to ensure affairs are in order such as a trust, advance directives, financial goals etc. A cancer navigator may assist with managing this process and help ensure it is not overwhelming to the individual or family.

The Need for Dementia Navigators:

Having a dementia navigator could help the individual with the diagnosis and their family understand the nature of the illness, learn of the resources available and when to access these resources. A navigator could help with planning for the dementia journey. A navigator can point people to resources care partners may not know about and could become a life line for the care partner. A navigator could help reduce the stress on a care partner, improving their quality of life and in turn also for the PLwD. A dementia navigator could be a central resource to know what grants are available for care, what clinical trials are happening that the PLwD may be eligible for.

A dementia navigator can provide personalized support, answering questions, and connecting individuals with appropriate resources.

Benefits of Dementia Navigators:

Having a Dementia Navigator in your practice, clinic or community could benefit families by giving them the education and tools to plan and properly prepare for what is to come. This can help reduce the care partner stress because it can arm everyone with knowledge and tools to understand and tackle challenges. It can help them feel part of a community instead of feeling alone and embarrassed to leave the house with their partner who has dementia because they are incontinent or swear, or have word salad.

Education and support are crucial. We need to create a culture of knowledge and security instead of fear and unknowns.

Call to Action

As I provide education to communities, I hear constantly, “I wish I had known this when my dad was alive” or “I wish I knew this earlier” We need to get ahead of the game and provide education and support as part of the post diagnostic process. Medical clinics need to provide education classes, similar to diabetes education clinics. More partnership between the medical provider and those living with dementia (families and individuals) needs to exist when a diagnosis is given to reduce a feeling of being alone and isolated.

Medicare has recently created a GUIDE model which begins to address this need. Currently, this model in in its infancy and applies to pre-approved providers. Maybe, in time, this will grow to meet the current needs, however what happens to the thousands who are diagnosed with dementia now and in the future, who are not living in an area with an approved GUIDE provider?

Improved support for those who are living with dementia and their care partners can improve the quality of life for everyone involved. This support could allow the person who is living with dementia to successfully age in place. I believe efforts can begin now to provide the education and support needed. Finding qualified people in your area to provide this support and training is within reach today.

Conclusion:

Dementia is a life altering diagnosis. There is a lack of education and funding to help families living with dementia navigate the progression of the condition. Cancer Navigators have been successful in their efforts to help families tackle the challenges they face with the cancer diagnosis by helping them with financial, emotional, social and medical needs.

A dementia navigator could be a partner to help families living with dementia navigate the challenges they may encounter. We can and must provide education and skills so that all those living with dementia can live their best life.

Take the First Step Towards a Supported Caregiving Journey!

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