10 Steps for Caring for a Person with Parkinson’s Dementia

Parkinson’s disease (PD) is known for its associated motor symptoms, such as tremor and slowed movement. People can be surprised to learn that cognitive changes are among common PD non-motor symptoms. Significant cognitive impairment can impact care partners, too. Education and healthy coping strategies ensure everyone’s best care.

The following article is based on a Parkinson’s Foundation Expert Briefings webinar exploring care partner strategies to identify and help people with PD dementia, hosted by Joseph Quinn, MD, a neurologist at Parkinson’s Foundation Center of Excellence Oregon Health & Science University and the Portland VA Medical Center. Dr. Quinn, the Parkinson’s Center director for both institutions, focuses his research on cognitive decline prevention and dementia treatment.

What is PD Dementia?

Mild cognitive impairment is very common with Parkinson’s disease. It can impact memory and thinking but doesn’t always affect daily activities. Dementia, however, is when cognitive changes impact daily living. Dementia may or may not occur in people with PD. According to recent research, 30 percent of people with Parkinson’s do not develop dementia as part of the disease progression.

The different types of dementia include:

Alzheimer’s disease – the most common form. Impaired memory is a prevailing feature.
Parkinson’s Disease dementia (PDD) – diagnosed when a person with Parkinson’s experiences cognitive decline after years of motor symptoms. Trouble multitasking and planning complex operations, vision problems and hallucinations are all common.
Lewy body dementia (LBD) – diagnosed when PD motor symptoms and cognitive decline happen around the same time, and progress together.

An allied team approach to Parkinson’s healthcare fosters optimal living; the same is true with PDD and LBD. The following 10 steps, adapted by Dr. Joseph Quinn from an Alzheimer’s Association checklist, can help care partners and families of people with PDD and LBD ensure everyone’s well-being, health and safety.

Parkinson’s Disease Dementia and Lewy Body Dementia Family Checklist

Confirm your diagnosis. Issues with mood, sleep, medications or other medical problems can all look like dementia. Your Parkinson’s doctor should look at all factors before a diagnosis of PDD or LBD is provided.
Find a doctor familiar with PDD and LBD. There is no single test for dementia associated with Parkinson’s. The diagnosis is made on clinical grounds. It’s important to find a specialist or physician familiar with dementia or geriatric medicine. Call the Parkinson's Foundation Helpline 1-800-4PD-INFO (473-4636) for a referral.
Get Parkinson’s dementia education, including:
- Medical advice – a physician can give diagnosis, outlook and treatment guidance.
- Legal advice – Discuss your healthcare and financial preferences with loved ones early on. Find a lawyer who can help formalize these preferences to ensure they are carried out if you are someday unable to voice them.
- Communication – the best ways to communicate with a person with PD dementia and deal with difficult behaviors aren’t always intuitive and require patience and acceptance.
- Key safety issues – prioritize everyone’s well-being by learning about PD dementia danger risks.
- Expert resources – call the Parkinson’s Foundation Helpline 1-800-4PD-INFO (473-4636), or search “cognition” or “dementia” in the PD Library. The Alzheimer’s Association also offers educational material.
Plan a family meeting. The needs of any person with dementia will increase over time. Family members should know how to modify communication and support the primary care partner.
Include the person with dementia in the decision-making process. Personality and judgement are often intact in early dementia stages. It’s important to give the person with dementia the chance to express their preferences, but it’s also important to know when safety concerns should limit decision-making.
Consider and monitor safety issues from the time of diagnosis. Take key precautions:
- Change driving privileges before safety becomes an issue. Your doctor can make a driving evaluation referral.
- Ensure financial safety. People with dementia are at greater risk of falling victim to scams and fraud.
- Limit prescription risks. Confirm medication names and doses with your loved one’s doctor. If the person is in dementia’s early stages and capable, fill their weekly pill box together and monitor use.
Work out financial and legal issues.
- Certain legal documents are important for everyone, regardless of age or health:
- An advance directive ensures your healthcare preferences are carried out if you cannot communicate them.
- Healthcare and financial power of attorney (POA) documents name whom you want to make related decisions for you, should you become unable.
- In later stages of PD (with or without dementia), consider physician orders for life sustaining care (POLST).
- Rarely, conservatorship or guardianship measures need to be put in place.
- An elder law attorney can help with financial planning for future healthcare and insurance needs.

Call the Parkinson’s Foundation Helpline 1-800-4PD-INFO (473-4636) for legal resource referrals in your area. Both the National Academy of Elder Law Attorneys and National Elder Law Foundation can offer referrals to navigate legal and financial planning complexities.

Seek out support services. Care partners need someone to talk with and rely on for support and regular breaks.
Provide an ID bracelet. Medical alert identification including a phone number is vital should the person with PD dementia wander or get lost, even briefly.
Focus on the primary care partner’s needs. To take good care of others you must first care for yourself.
- Have an emergency care plan to ease transitions should others need to unexpectedly take over care duties.
- Attend a support group or talk to someone.
- Build in weekly time for yourself.
- Get adequate sleep to better cope with daily challenges.
- Remember your sense of humor.
- Sustain supportive friendships.
- Value yourself.

Care Partner Self-Care Steps

Compared to their peers, studies show caregivers to a loved one with dementia face increased health risks. A collaborative Centers for Disease Control and Alzheimer’s Association cognitive health roadmap shows caring for your heart can also benefit your brain.

To reduce care partner heart, stroke and cognitive decline risks, embrace the American Heart Association’s online My Life Check health assessment tool and “Life’s Simple 7” checklist, which includes: