April is Parkinson’s Awareness month. Parkinson’s disease is the second most common neurodegenerative disease after Alzheimer’s that affects the brain and cognitive function. While care management for Alzheimer’s and other dementias often gets more visibility, Parkinson’s disease can be just as complex to manage. With an aging population, the incidence of Parkinson’s is increasing, so estate planning advisors need to understand the disease process and assist clients in how to plan for their care and how to pay for it.

What is Parkinson’s disease?

Parkinson’s disease (PD) is a neurodegenerative disorder, meaning it gets progressively worse, and there is no cure. It affects predominately the dopamine-producing (“dopaminergic”) neurons in a specific area of the brain called the substantia nigra.[1] It can be challenging to diagnose and can affect every aspect of a person’s life. Each person has a unique disease experience that contributes to the complexity of managing an individual’s care.

Although Parkinson’s is labelled a movement disorder disease, there are both movement and non-movement components to the disease. The movement components include:

• The slowness of movement and speed or hesitations and halts are known as bradykinesia.
• Shaking or tremor in a limb that occurs while it is at rest.
• Stiffness or rigidity of the arms, legs, or trunk, and
• With progression, there will be increasing problems with balance and falls.

The non-movement components of the disease can involve various body systems, such as:

• Loss of smell.
• Skin changes.
• Mental health concerns such as apathy, depression, anxiety, and
• Cognitive impairment.

Mild cognitive impairment is estimated for about 50% of people with Parkinson’s disease. Care partners will notice some changes in cognition, but those changes will not seriously affect their daily activities. More profound types of dementia, such as Lewy Body Dementia and Parkinson’s Disease Dementia, are also associated with the disease.[2]

For an excellent overview, you can refer to this video by the Michael J. Fox Foundation on Parkinson’s.

The incidence of Parkinson’s is growing, with one hundred million people worldwide and an estimated 100,000 people in Canada. The incidence has doubled in the last twenty-five years and is expected to double again by 2040. In 2022, research conducted by US and Canadian researchers, as outlined in the paper ‘Incidence of Parkinson’s Disease in North America’,  confirmed that Parkinson’s increases in the 65-year-plus age range; more men than women get Parkinson’s in all age ranges; about 4% of people are diagnosed before the age of 50; and, certain regions such as the rust belt in the USA have a higher incidence than other regions.

The cause of Parkinson’s is unknown, and the disease is genuinely diverse; however, researchers are exploring a combination of genetics, environmental, and lifestyle factors. For example, environmental factors include long-term exposure to herbicides and pesticides, among other factors. Lifestyle factors include previous traumatic brain injury, the region where you live, age, and gender, with more men than women diagnosed at all ages.

Why is Parkinson’s so difficult to diagnose and manage?

There is no one test for the disease, and it is a clinical diagnosis, meaning it is based on an array of clinical findings and other tests, such as blood work and CT imaging, over time.

While family doctors may be the first to establish a working diagnosis, they will often refer to a neurologist who is a movement disorder specialist. The Parkinson’s Foundation promotes a Global Care Network including the following Canadian centres of excellence:

• McGill Parkinson Program
• University of Calgary
• University of Alberta
• Pacific Parkinson’s Research Centre, University of British Columbia
• Toronto Western Hospital Movement Disorders Center

One of the biggest challenges for care partners is that every person’s Parkinson’s is unique. Therefore, their treatment and care management plans will be unique, too. Best practice suggests that the person assemble a team around them, including a movement disorder specialist, various health care professionals such as physical and occupational therapists, and a dedicated care team to support the treatment efforts and care management.

As the disease progresses, attorneys for personal care and family members may invariably struggle with the question of whether the person can safely remain at home. The availability of financial resources is an important planning factor. Round-the-clock care in the home can be costly; current costs for a Personal Support Worker range from $31.00 per hour ($744/day or $22,320/month) to $45.00 per hour ($1080/day or $32,400/month) plus HST. The family may consider assisted living in a private retirement community if more care support is required. Or, families may consider application to a long-term care setting. It is wise for family members to seek expert advice in this area to address appropriate care needs and feasible options and costs.

Management of a care situation with Parkinson’s disease very much depends on the individual, their environment, and the type of expert support and resources they can obtain. Being a care partner is stressful, and frequently, care partners themselves become patients due to the physical and emotional toll. Family members and attorneys for personal care are often ill-prepared for the caregiving role. They are often surprised that this can last ten or fifteen years after diagnosis.

In summary, as family members and planning advisors, one of the first steps we can take after a Parkinson’s diagnosis is to educate ourselves on the disease and the realities of care management and then focus on personalized care planning and managing the resources to pay for it.

[1] https://www.parkinson.org/understanding-parkinsons/what-is-parkinsons

[2] https://www.parkinson.org/understanding-parkinsons/non-movement-symptoms/dementia