April 1st, 2021 | Press Releases
Let’s start with what most of us know about Parkinson’s disease (PD). Comparatively common in older adults, it’s a neurological disorder estimated to affect nearly 2% of those over age 65, estimated by the National Parkinson’s Foundation to be one million Americans in 2020. Public figures, such as the popular actor Michael J. Fox, who has PD, have increased the public’s awareness and understanding of the disease.
Now let’s consider the side of PD less talked about: Parkinson’s Disease Dementia (PDD). Usually, the condition is depicted as auditory and visual hallucinations of imagined occurrences, delusion, and paranoia that follow the more visible motor dysfunction typical of Parkinson's. In fact, the dementia component of PD usually does not appear earlier than a year or more after the diagnosis. The average time from onset of Parkinson’s to signs of dementia may be around ten years if certain studies are correct. The phenomenon may also be more common than most people think. That’s why, to recognize April as Parkinson’s Awareness Month, we’re focusing on the dementia phase of the disease.
The University of California, San Francisco, Weill Institute for Neurosciences Memory and Aging Center outlines the symptoms of PDD: 1
- Trouble focusing, remembering things or making sound judgements
- May develop depression, anxiety or irritability
- May hallucinate and see people, objects or animals
- Sleep disturbances
The Alzheimer’s Organization states that “an estimated 50 to 80 percent of those with Parkinson’s eventually experience dementia as their disease progresses.” There's no single test or combination of tests that can give a conclusive diagnosis of PDD, which may partly account for the wide range in the statistics. An original diagnosis of Parkinson’s will be based on movement irregularity, with PDD symptoms at least a year off. This puts greater importance on working closely with a physician for an early diagnosis. Sadly, the deterioration of brain cells by PDD can't be stopped or slowed. Drug therapy can alleviate some of the symptoms.
The Difference Between Parkinson’s Dementia and Others
The difference among various dementias can be confusing, and dementia should never be self-diagnosed instead of consulting with a neurology specialist. First, consult your primary physician. The International Parkinson and Movement Disorder Society provides a directory of movement disorders specialists to search for a specialist in your area.
Dementia with Lewy bodies (DLB) is a spectrum of dementia-related to Parkinson's, which is also characterized by the formation of Lewy bodies, clumps of protein that form in the brain. PDD symptoms resemble DLB, which also causes changes in thinking, behavior, and movement. The difference between PDD and DLB is that with DLB behavior and cognition impairment symptoms occur first, whereas Parkinson’s will present as movement impairment with dementia appearing later.2 While the cause of PDD is unknown, scientists think the progression of Lewy body protein build-up first affects motor control, and eventually, enough nerve cells die that the first signs of dementia appear.
Different clumps of protein form in a brain affected by Alzheimer's Disease (AD). Another difference between Alzheimer’s and similar dementia is that Parkinson’s tends to affect attention and executive function more than memory. An essential and hopeful distinction: although the symptoms are similar, people with PDD are not at risk of developing Alzheimer’s Disease, according to the Pacific Brain Health Center. Nor is long-term memory likely to be as affected. The characteristic loss of recognition of loved ones and a general awareness that affects Alzheimer’s patients is not typical of PDD.3
Aging and Parkinson’s
Johns Hopkins Medicine states: “The older you are, the greater your risk of developing Parkinson disease.”4 The Michael J. Fox Foundation, in its downloadable brochure Navigating Cognitive Changes in Parkinson’s, also notes "Cognitive changes from Parkinson's often are different or more than you'd expect with age." The example they offer is a helpful illustration of the difference between ordinary changes in memory function due to age and those caused by Parkinson's. Ordinarily, you'll forget where you left your keys, and this may become more common as you age. By contrast, forgetting what your keys are used for or how to use them signifies a more severe dysfunction related to dementia.
Caregiving at Home
People with PD may get along well with home caregiving with the help of a spouse for years. The onset of PDD can change this significantly, primarily in disrupting the ability to communicate. Be prepared that the disorientation will change a person’s behavior. They may not be able to be left alone and may become moody, impulsive, and annoyed.
A few simple communication techniques are recommended for the caregiver:
- Establish a daily routine. Having meals, exercise, and activities at roughly the same time every day avoids annoyance and anxiety in your loved one.
- Simplify living areas. Reduce distraction and shadows.
- Keep the home brightly lit.
- Remain calm and empathetic. Remember, it's the disease and not a conscious decision that creates erratic behavior.
- When evaluating the move to an Assisted Living or Memory Care community, consider that all the above features are incorporated into a well-designed, quality care residence.
Try to establish a gentle regimen for your loved one with PDD. It will be difficult to change old habits, and those that are not harmful might be comforting. But some boundaries may need to be set to add years of a higher quality of life. These are things to encourage the person with PDD to do:
- Be socially active – Engaging with friends exercises your cognitive skills, remembering names, etc.
- Get involved in the community – Maintain a sense of self-worth.
- Exercise regularly – Exercise also releases natural brain chemicals that can improve emotional well-being.
- Eat a healthy, balanced diet – High protein meals can benefit your brain chemistry.
- Train your brain – Play “brain games” – online puzzles are great – or playing cards with your caregiver.
- Reduce stress
- Sleep well
- Take care of medical conditions – Diabetes, high blood pressure, and high cholesterol
- can damage your brain’s blood vessels and lead to
- thinking and memory problems.
- Check on mood and motivation.
- Review your medications – Certain prescription and over-the-counter medications can confuse some people. Consult your physician.
- Drink in moderation
- Don't smoke – Smoking is related to Alzheimer’s and other cognitive disorders.
Caregiver stress shows up on your face and in your manner in subtle ways that nonetheless are easily picked up by your loved one. Give yourself a break. Dementia will place demands on your relationship, and this is natural. You should get enough sleep and regular nutrition. Seek counseling from your specialist to help you stay on even keel.
Assisted Living, Memory Care and Nursing Homes
There are no long-term care communities exclusively for people with Parkinson's. Assisted Living and Memory Care communities are typically equipped for their particular needs because of the prevalence of the disease. There will very likely become a point where loved ones will not care for themselves in significant ways, such as getting dressed and preparing food. Dementia, of course, will further inhibit their abilities. Assisted Living is a good option for earlier PD stages. Still, the onset of dementia, which can take years, will require Memory Care for optimum therapy and assistance with daily living. It is worth considering whether an inevitable move from Assisted Living to Memory Care is desirable or if Memory Care is the best initial choice. Memory Care residences should include specific physical design to aid dementia patients in navigating to and from and within their rooms or apartments. Staff should be highly trained and compassionate. Programming should rely on the best medical practice and cognitive science. Either Assisted Living or Memory Care, or a nursing home, will provide meals, assistance with daily living routines, and emergency care. The costs and level of care among the three vary widely. Interview the residence director and health care director to assess the level and quality of care the residence can provide.
For More Information About Parkinson's:
If you or your family has questions about Parkinson’s disease and Parkinson’s Disease Dementia, want information about treatment, or need to find support, consult your primary care physician and contact any of the following organizations:
The American Parkinson Disease Association.
National Institute of Neurological Disorders and Stroke
Michael J. Fox Foundation for Parkinson's Research