As your loved one’s care needs change, you must continually reevaluate your need for help as a care partner. As Parkinson’s disease (PD) advances, your needs might evolve from picking up groceries every now and then to hiring a home health aide for a few hours at a time. Eventually, full-time home care or a skilled nursing facility might be necessary.

Ultimately, when it becomes too difficult to balance your own life with your caregiving responsibilities, or when the physical burden is more than you are capable of, it might be time to get outside help. While it may feel overwhelming to bring in outside help, there are resources available to help plan, and, in some cases, finance these services. The Parkinson's Foundation Helpline at 1-800-4PD-INFO (473-4636) is also here to help you find resources available to you.

Where to Find Help

The National Family Caregiver Support Program (NFCSP) provides grants to states and territories to fund a range of support services that assist family and informal caregivers to care for their loved ones at home for as long as possible. The care recipient must be 60 years of age or older.

Services include:

• Information to caregivers about available services
• Assistance to caregivers in gaining access to the services
• Individual counseling, organization of support groups and caregiver training
• Respite care
• Supplemental services, on a limited basis

Volunteers

The National Volunteer Caregiving Network (formerly Faith in Action) exists to share knowledge, experiences and ideas that help strengthen and support hundreds of local volunteer caregiving programs throughout the U.S. and to foster the establishment of new interfaith volunteer caregiving programs. You should also check if your town has a volunteer agency; the agency will do background checks and training before assigning volunteers.

In-Home Care Providers

Home healthcare agencies may be affiliated with hospitals and focus on the medical aspects of care. Services from these agencies are generally limited by insurance or Medicare to a certain number of visits. Home care agencies provide non-medical services including personal

care, housekeeping, companionship and supervision.

Action Plan for Hiring In-Home Caregivers

• Define your loved one’s and your caregiving needs. How many hours and days a week do you need help? With what activities do you need help?
• Develop a job description. Include a list of household tasks, personal care tasks and leisure activities that the home care worker will be expected to do.
• Find out about legal, financial and tax issues. Check with your insurance agent to determine whether your homeowner’s policy covers property damage, theft and personal injury that involves an employee or other person working in the home.
• Screen and interview applicants. If you are hiring privately, you will first want to interview candidates by phone, then set up in-person interviews with the most promising ones. If you are hiring from an agency, you may only be presented with one candidate at a time. Presumably, the agency has used the information you provided in their care planning interview to pick the best match for your needs.
• Check references and backgrounds. Whether hiring an agency to provide your home care worker or hiring privately, it is vital that you ask for at least two references. Check them! The agency should have done a criminal background check on their employees, but you will need to do one if you hire privately.
• Sign a contract or care provider agreement.
  • If you are using an agency: they will supply a contract that shows what services have been contracted, what rate will be charged, any charges for additional services and billing information.
  • If you hire privately: create a written agreement that specifically outlines the terms of employment including salary, days and hours of service, any benefits, work rules and notice required for either party to terminate the agreement.

For more information about caregiving, hiring outside help and worksheets that can help, check out Caring and Coping.

The dog lovers among us have yet another reason to treasure their pups — namely, that service dogs may be able to make life easier for people living with Parkinson’s disease (PD). Service dogs can help with a number of PD symptoms from physical challenges such as balance to social and emotional issues as well.

Carolyn Weaver is an alumni member of our Parkinson’s Advocates in Research (PAIR) program. Her half-Labrador Retriever, half-Golden Retriever, Selma, helps with her mobility.

“Selma is trained primarily to help me with the freezing episodes that I experience from Parkinson’s,” said Carolyn. “To help me get moving when I get stuck, she pulls forward while I hold onto a harness that she wears. She knows to pull forward just enough to get me going, but not so much as to pull me over. She is very patient. I move pretty slowly and she just waits for me until I am ready.”

About 38 percent of people living with PD fall each year. Service dogs can be trained to provide balance, support when standing back up or alert others that this person had fallen.

“If I fall, I can call her with the command BRACE, and she stands nearby and gets rigid over her shoulders and hips so that I can pull myself up by holding on to her. She can also help to pull me out of chairs and out of bed, using a tug.”

Service dogs are also known to bring joy and confidence to the relationship. It is estimated that at least 50 percent of those diagnosed with PD will experience some form of depression during their illness, and up to 40 percent will experience an anxiety disorder. Therapy dogs can be brought into a person’s home to counter non-motor symptoms such as depression, anxiety and social isolation.

“When someone lives with PD,” Carolyn explains, “it is very common for them to want to just stay at home. It can be hard to be out in public because people stare at you, and you may have a fear of falling. Selma has taken all of that away. People love service dogs, so it kind of takes the attention off of you, as the person with PD, and puts the focus on the service dog. This allows me the luxury to be able to get moving again without people staring at me. She keeps me going.”

People interested in owning a service dog should speak with their care team. There are many dog programs across the country where their sole purpose is to train basic obedience and advanced service skills tailored to their future partner’s needs.

If all parties agree that a service dog is the right answer for an individual living with PD, Carolyn’s best advice is to apply now! The process can be lengthy.

“I think someone with PD should consider a dog not only to help with balance and other physical symptoms, but also to offer companionship. The confidence Selma has given me is amazing.”

To learn more about therapy options for those living with Parkinson's disease, call the Parkinson's Foundation free Helpline at 1-800-4PD-INFO (473-4636).

As a caregiver for a loved one with Parkinson’s disease (PD), your days may include medication alarms, driving to and from appointments and helping your loved one with activities of daily living. Simultaneously, you may be managing finances, cooking, working and trying to keep up with family and friends. It can be easy to forget that your needs require attention too. Self-care is defined as any practice that relieves stress and encourages a healthy mind and body.

We know you are busy, so we’ve compiled 15 realistic ways you can implement self-care…starting now:

1. Eat healthy with less hassle. The better you eat, the better you feel.
2. Manage stress. Determine what helps you relax most: a hot bath, a meditating app, reading a new book or going on a walk. Then devote time to it every day.
3. Exercise regularly. We know that exercise plays a role for your loved one’s PD, and consistent exercise can also help you. Just 30 minutes of daily exercise can help you sustain your energy and lead to better sleep.
4. Set limits and stick to them. This means asking for help when you need it. Try new resources. Bring in outside help (family or paid worker) so you can take a break. Call the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (473-4636). No one can do everything for everyone all the time!
5. Reflect on the rewards of caregiving. Alongside trials and challenges, caregiving offers triumphs and joys. Take pride in how much you have learned and in discovering your own strengths.
6. See to your own health needs. Set up and attend your own medical appointments regularly. Your physical and mental well-being are key to successful caregiving.
7. Find activities you can enjoy with your loved one outside of care. Go to a movie, host a dinner party or sign up for something new. Enjoy time together.
8. Drink plenty of water. Staying hydrated helps flush out toxins, so bring a reusable bottle wherever you go.
9. Socialize with people who uplift you. Nothing can empower you like a feeling of camaraderie. Minimize exposure to negative people. Instead, go out with friends or get involved with a community organization, support group or charity that you believe in.
10. Laugh. Keeping a sense of humor helps beat anxiety. Watch a funny video or read something funny every day. Recognize and enjoy the happy moments with your loved one.
11. Schedule breaks from caregiving and make them a priority. Take time to pursue other aspects of your life or just to relax. Plan these breaks in advance and arrange for help while you’re out.
12. Cultivate a mindfulness practice. Try morning meditations or set a daily reminder to assess how you are coping. If you are stressed, plan your next break.
13. Life plan. Thinking about your future and what you want to achieve in life can help you maintain personal motivation. Can your loved one help you reach your goals?
14. Accept your feelings. Guilt, anger and depression are normal reactions to a progressive disease. Recognize the hidden grief component in these emotions and seek out someone who understands it. Knowing what to expect emotionally can help.
15. Practice being grateful. Recall or write down a few things from your day that made you or your loved one smile. Learn to savor the good times and the things that went right, however small.

Want more caregiver resources? Read Caring and Coping: A Caregiver’s Guide To Parkinson’s Disease or call our free Helpline at 1-800-4PD-INFO (473-4636) for answers to your caregiving questions.

Non-movement Parkinson’s disease (PD) symptoms can impact mental health, relationships and quality of life. The Parkinson’s Foundation has conducted two recent studies dedicated to learning more about treating non-movement symptoms within its Center of Excellence Network.

Centers of Excellence are medical centers with a specialized team who are up to date on the latest Parkinson’s medications, therapists and research to provide the best care to a combined 185,500 people with Parkinson’s.

This year, the Parkinson’s Foundation will share their research findings at two international conferences: at the International Congress of Parkinson’s Disease and Movement Disorders in Nice, France, and at the World Parkinson Congress (WPC), which took place in June at Kyoto, Japan.

Both conferences gather thousands of neurologists, researchers and health professionals in the Parkinson’s community.

Multidisciplinary Care Models for Parkinson’s Disease: The Parkinson’s Foundation Centers of Excellence Experience

People living with Parkinson's benefit most from a comprehensive, team-based healthcare approach, where different specialists treat motor and non-motor symptoms as the disease progresses. Every Center of Excellence works with a multidisciplinary team in one of three different care models:

1. Team members are all in the same institution.
2. Team members are within different, but affiliated institutions.
3. Team members are in separate institutions, mainly community based.

The Parkinson’s Foundation studied usage of complementary health therapies across the three models and examined relationship between therapy usage and clinical outcomes. The study used Parkinson’s Outcomes Project (the largest ongoing Parkinson’s study) data to analyze 10,058 patients from 22 designated centers. The study showed that:

• Therapy referrals varies across different disciplines among Centers of Excellence, with physical therapy being the most common referral.
• Psychosocial and mental health therapies may be underutilized ― in terms of physician’s referrals and patients seeing a mental health professional.  
• There were significant differences in clinical outcomes across care models.

These findings show the need to expand our understanding of how different care models and therapies (such as occupational, physical and psychological) affects care and outcomes for people with PD.

→ This study was shared at the 2019 World Parkinson Congress in Kyoto, Japan. Authors: Clarissa Martinez-Rubio, PhD, Jennifer G. Goldman, MD, MS, Samuel S. Wu, PhD, Hanzhi Gao, Fernando Cubillos, MD, Nadia Romero and Veronica L. Todaro, MPH.

Relationships of Gender, Care Models and Neuropsychiatric Symptoms In Parkinson’s Disease

In this study, the Parkinson’s Foundation compared complementary health therapies across the three care models mentioned above in relation to the difference between men and women living with Parkinson’s, their outcomes, management of the neuropsychiatric symptoms ― specifically depression and psychosis.

Using data from the Parkinson’s Outcomes Project, we studied 10,058 people with PD seeking treatment at 22 Parkinson’s Foundation centers who experienced depression or psychosis, referred to a psychologist or psychiatrist and receiving antipsychotic or antidepressant medication. The study showed that:

• Depression and psychosis are experienced and treated differently depending on gender.
• Psychosocial and mental health therapies may be underutilized ― in terms of physician’s referrals and patients seeing a mental health professional.  
• Significantly more women than men were identified with depression, self-reported limitation of activity due to depression and received antidepressant medication.
• People with Parkinson’s who sought care at a center with an external allied healthcare team were significantly more likely to be hospitalized due to mental health, gastrointestinal issues and DBS-related symptoms.

These findings show the need to expand our understanding of how different care models and usage of complementary therapies affects care and outcomes for people with PD, as well as, the need to expand our understanding on how gender affects these factors

→ This study was shared at the 2019 International Congress of Parkinson’s Disease and Movement Disorders in Nice, France. Authors: Jennifer G. Goldman, MD, MS, Clarissa Martinez-Rubio, PhD, Samuel S. Wu, PhD, Hanzhi Gao, and Veronica L. Todaro, MPH.

Learn more about the Parkinson’s Outcomes Project at Parkinson.org/Research.

Everyone processes a Parkinson’s disease (PD) diagnosis differently. Navigating a range of emotions — from relief to despair — can feel overwhelming. Built on community, the Parkinson’s Foundation is here to support people newly diagnosed with Parkinson’s and their care partners now and at every stage of their journey.

“Newly Diagnosed: Building a Better Life with Parkinson’s” is the Parkinson’s Foundation campaign working to close the gap between a PD diagnosis and the essential resources that can inspire and support people new to Parkinson’s.

The goal is to help connect those new to the PD community with others living with PD and work toward building a network of support. These five steps can equip people with Parkinson’s with tools that foster well-being while ideally reducing worry and improving day-to-day living.

1. Determine Your Goals

Create an action plan, honor your efforts as you take small steps towards success and don’t be afraid to ask for help. Call the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (473-4636) for answers to all your questions, starting with your diagnosis.

Thinking about what is most meaningful to you, then working it into your daily routine, can be inspiring and empowering. Setting small, clear personal goals — whether designed to boost health or personal connections — and following through, can help you live well. Be sure to reward yourself when you master a goal. This can help inspire you to tackle and conquer your next challenge.

2. Find Someone to Talk to

You are not alone. It’s important to understand how Parkinson’s can impact you physically and how it can impact your mood and emotions. Finding someone to talk to can provide connection, comfort and understanding. A counselor or PD support group can provide opportunities to talk about shared experiences, relieve stress and build new friendships.

Whether you seek out a counselor or join a support group, sharing your feelings can help you navigate them and prevent isolation.

3. Create Healthy Habits

Maintaining good health is vital to living well with Parkinson’s. Everyone with PD should strive for good nutrition and ample sleep. Vegetables, fruits, whole grains, milk and dairy products, protein-rich foods and healthy fats, like olive oil and nuts, can improve energy, fight constipation and keep bones strong. Try planning meals in advance to ensure a healthy diet.

Getting enough sleep helps manage mood, health and PD symptoms. Make sure to keep your sleeping area, cool, dark and free from electronics, to ensure plenty of rest.

4. Be Active

Exercise is essential to managing almost every aspect of Parkinson’s. Steady physical activity can improve many symptoms and offers a neuroprotective effect. It can also improve mood, coordination, flexibility, working memory and more. Moving Day, A Walk for Parkinson’s, is a great way to get active.

The Parkinson’s Outcomes Project shows that people with PD who start exercising earlier and a minimum of 2.5 hours a week, experience a slowed decline in quality of life compared to those who start later. Establishing early exercise habits is essential to overall disease management.

5. Find a Parkinson’s Expert

Working together with a movement disorder specialist or neurologist who specializes in PD ensures you get the best possible care. Neurologists are doctors who work with brain and central nervous system conditions such as PD. Movement disorder specialists — neurologists with additional training to treat people with Parkinson’s at every stage of the disease — can be a key addition to a quality care team.

Your primary Parkinson’s doctor can recommend other healthcare professionals who can help treat day-to-day challenges. When possible, assembling a holistic, care team can optimize your well-being.

To reach more newly diagnosed people, the Parkinson’s Foundation has launched new resources, compiled expert advice and a new online community for people with Parkinson’s, family members and care partners to build a better life with Parkinson’s.

Visit Parkinson.org/NewlyDiagnosed to order or download Newly Diagnosed resources.

Regardless of where your loved one is on their Parkinson’s disease (PD) journey, you are the only one who can define “caregiving.” Especially following a new diagnosis, you might not feel like you are actually “giving” care. Similarly, your loved one might not see himself or herself as someone in need of care. But remember, care is not limited to physical tasks. Care can be emotional and spiritual as well as physical.

With resources created for care partners like our Caring and Coping educational book and Caregiver Summit videos, the Parkinson’s Foundation is here for caregivers. This November, for National Caregiving Month, we are asking our PD community to share their caregiving #KeyToPD. These care partners tell us their #Keys:

“I use a black container to put my husband's medications in when I get them ready for him to take. I used to use the clear or white plastic cups, but since most of his pills are white or light colored it was sometimes difficult for him to see them. Then I found some black sauce cups from an Italian restaurant and he can now see the pills much better.”
– Susan W.

“Being a caregiver is probably the most difficult job you’re ever going to have. The only way you can do it is to take care of yourself. You cannot say, ‘I don’t have time for me.’ The person you’re taking care of wants the best for you because you’re giving the best to them. Don’t be a martyr. It’s okay to take care of yourself.”
– Karen

“Planning. I am the live-in caregiver for my mom with PD.  I set aside a few hours one day a month to set up her pills in four, seven-day containers. That way in case something comes up, at least we have her pills ready. Also, I set alarm timers in both our phones for her pill times. Such a big help!”
– Megan F.

“A ‘couch cane.’ This allowed my mother more independence for a while longer. She could get herself up from her couch using the couch cane. Her walker was right next to it, so once she arose, she could use the walker to move to the bathroom on her own.”
– Jean B.

"When you go to the support groups, when you go to the meetings, you meet other people with the same problems, the same difficulties. It’s a wonderful way to communicate, understand what you’re up against and get advice from other people. As you get together you start talking, you start confiding, and you find that you get people that are very willing to listen. That’s very important to me.”
– Carolyn

“We used to carry 2-ounce slices of cheese and 1.92-ounce single-size candy bars. Whenever my wife's dyskinesia got bad, she would eat one or two slices of cheese and the protein would counteract the excessive Sinemet causing the dyskinesia. Whenever her feet froze to the pavement, she would pop a chocolate bar and that would unfreeze her.”
– George A.

 “Even as life changes, never stop striving to increase the qualities of your life together.”
– Judith

The Parkinson’s Foundation does not endorse products mentioned in this article.

To have a good night’s sleep, we should work to create healthy habits and a sleep routine. Just as you brush your teeth to maintain good dental health, there are things you can do to improve nighttime sleep and daytime alertness.

Sleep-related symptoms are reported by more than 75 percent of people with Parkinson’s disease (PD). For people with PD, sleep becomes even more important as the body needs more time to restore and repair itself. The brain changes that are part of PD can also cause sleep disorders and some people have problems sleeping even before PD is diagnosed.

Getting enough sleep is essential, not just for people with PD. These seven tips can help you create healthier habits for a better sleep.

1. Set a schedule

Set a specific time to go to bed. Making this a habit will help you keep track of the hours you sleep and maintain a schedule. Going to bed and getting up at the same time helps set good sleep-wake rhythms.

2. Limit naps

If you nap, try to do so at the same time every day, for no more than an hour, and not after 3 p.m. Daytime naps may make it hard to fall and stay asleep at night. Not all naps are bad, studies have shown that short naps (lasting 15–20 minutes) may improve mood, alertness and performance on activities of daily living and other tasks. 

3. Spend time in natural light

Light helps set our internal clock. Studies have linked daytime exposure to natural light with sounder sleep. If you can’t get outdoors, consider light therapy — sitting near a light therapy box. Studies have also suggested that movement and non-movement symptoms may improve with light therapy.

4. Exercise

For people with Parkinson’s, exercise can help maintain balance, mobility and activities of daily living. Among many of its benefits, exercise promotes good sleep. After a workout, give yourself a few hours to let your body regulate its temperature, adrenaline and heart rate. Try to exercise every day and avoid exercise after 8 p.m.

5. Avoid caffeine nicotine and alcohol

While coffee can help with daytime sleepiness, caffeine and nicotine are stimulants that can cause insomnia. Avoid them in the afternoon or at night. Alcohol may help you fall asleep, but sleep can be interrupted as your body processes alcohol.

6. Relax

Getting in a relaxed mood can reduce anxiety and lead to better sleep. Make relaxation rituals a habit and listen to music or take a warm bath to settle down. Do not watch television in bed; try to use the bed for sleeping or sexual activity.

7. Regulate the bedroom temperature

A cooler temperature is better for sleep but try to avoid temperature extremes. Environments that are too cold or too warm are not conducive to good sleep. Regulating the temperature will help with your relaxation and sleeping mood.

Sleep is a critical topic of interest for the PD community, which is why the Parkinson’s Foundation has multiple resources dedicated to address it:

• Sleep: A Mind Guide to Parkinson’s Disease
• Episode 46: Addressing Sleep Discomfort with Parkinson’s
• Sleep Disorders

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

1. 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.
2. 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.
3. 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.
4. 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.
5. 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.
6. 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.
7.  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.

8. Seek out support services. Care partners need someone to talk with and rely on for support and regular breaks. 
9. 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.
10. 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:

1. Aerobic exercise
2. Control cholesterol
3. Eat according to Heart Association guidelines
4. Manage blood pressure
5. Manage weight
6. Reduce blood sugar
7. Quit smoking

Learn More

Learn more Parkinson’s and dementia in the below resources or by calling our free Helpline at 1-800-4PD-INFO (473-4636).

• Book: Caring and Coping
• Caregiver articles: Dealing with Dementia, Caregiver Stress, Your Health Needs

Together, we made life better for people in our Parkinson’s community in 2019. Your support allowed us to launch new, exciting initiatives that are changing lives, while funding critical research and local classes tailored to people with Parkinson’s disease (PD). With your support, we are reaching more people living with this disease in the U.S. and are closing the gap to help the 60,000 Americans diagnosed every year.

Thanks to YOU, we were able to accomplish the following in 2019:

1. Launched First-of-its-Kind Free Genetic Testing Initiative
   We launched PD GENEration: Mapping the Future of Parkinson’s Disease, a national initiative that offers free genetic testing for clinically relevant PD-related genes and free genetic counseling. We are excited to reach our goal of testing and providing genetic counseling for up to 15,000 people with PD.
    
2. Funded $12.2 Million to Further Parkinson’s Research
   This was an impactful year for Parkinson’s research. We established four new Research Centers that will receive a total of $8 million to launch PD-specific research studies. We also  simultaneously funded $4.2 million across 46 research grants that support the work of promising scientists in the PD field, cutting-edge clinical trials and fellowships.
    
3. Designed Program for People Newly Diagnosed with Parkinson’s
   With a focus to reach the 60,000 people who are newly diagnosed with PD each year in the U.S., Newly Diagnosed: Building a Better Life with Parkinson's Disease aims to close the gap between diagnosis and knowing where and how to find the right information and resources to live better with PD. Order or download the free Newly Diagnosed kit. 

4. Shared Research Findings at the 5th World Parkinson Congress
   In June, we enthusiastically joined our international community at the 5th World Parkinson Congress (WPC) in Kyoto, Japan, where our PD experts shared 10 research posters.
    
5. Expanded our Centers of Excellence Care Network
   Every year, we hope to bring expert care to more people with PD. In 2019, we expanded our Center of Excellence global network to include three new centers. Centers of Excellence are a medical center with a specialized team who provide expert Parkinson’s care. Find a Center of Excellence in your area.
    
6. Partnered with Michael J. Fox Foundation for Parkinson’s Research to Report New Economic Burden and Host Policy Forum
   In 2019, we collaborated with the Michael J. Fox Foundation (MJFF) to publish that the economic burden of Parkinson’s is nearly $52 billion every year. Together, we also hosted the 2019 Parkinson’s Policy Forum, bringing more than 150 advocates from across the U.S., along with leading experts in PD research to advocate for our community.
    

7. 

   Granted $1.5 Million to Local Communities for Parkinson’s Programs
   We proudly funded $1.5 million throughout 118 community-based grants that provide education and outreach programs, along with local research initiatives, that address unmet needs in the PD community.

8. Issued First Patient-Centered Research Agenda for Women with PD
   Recognizing long-standing gender disparities in Parkinson’s research and care, our Women and Parkinson’s Initiative created the first patient-centered action agenda to maximize quality of life for women with Parkinson’s.
    
9. Appointed Aware in Care Ambassadors
   In 2019, we appointed our first-ever  Aware in Care Ambassadors, a volunteer group to help distribute Aware in Care kits that serve to bolster best practices in treating patients with Parkinson’s disease to both patients and healthcare providers.
    
10. Designed New Online Nurse Course
    With the prevalence of PD expected to increase in the coming years, we wanted to provide more professional education opportunities for nurses. In 2019, we launched a new online course for nurses who deliver care throughout all stages of Parkinson’s. 

As much as we accomplished in 2019, we are committed to furthering our reach and impact in 2020 to help even more people live better with Parkinson’s. Your continued support is the only way we can make that happen. Thank you.

Navigating Parkinson’s disease (PD) is a life-long process for care partners, but you don’t have to do it alone. We’re here for you with these top 10 caregiver resources:

1. Helpline

Our Helpline specialists answer all Parkinson’s and care partner questions and refer health care professionals. Call 1-800-4PD-INFO (1-800-473-4636) or email Helpline@Parkinson.org.

2. Caring and Coping

This comprehensive guidebook was written for care partners at every stage of PD. The workbook contains tips and tools to make the caregiving journey as productive as possible with the least amount of stress.

3. Podcast

As a caregiver, it is important to stay up-to-date on Parkinson’s. Listen to our podcast, Substantial Matters: Life and Science of Parkinson’s, as we cover PD treatments, research and techniques to help you and your loved one live better every day. Subscribe or listen online.

4. Parkinson.org/Caregivers

From beginning your care partner journey to caring for someone with advanced PD, our articles are devoted to helping you navigate all stages of PD. 

5. Videos for Care Partners

Our YouTube playlist features tips, interviews with care partners, advice for those caring for a loved one with advanced Parkinson's and more. 

6. Care Partner Courses

This set of one-of-a-kind self-paced online courses offers videos, journal prompts and opportunities to connect with care partners about the topics that are most important to you. Enroll now in our Care Partner Program: Building a Care Partnership.

7. Expert Briefings

Find out what leading PD doctors and other experts have to say through our Expert Briefings webinar series.

8. Advanced Parkinson's Information 

As Parkinson's advances, the care partner role evolves. Read our Advanced Parkinson's page, along with the challenges unique to this stage, including Thinking Changes & Dementia and Activities of Daily Living.  

9. PD Library

Parkinson’s knowledge is power! Visit our PD Library for our vast collection of free publications and fact sheets.

10. Virtual and In-Person Events

Explore upcoming virtual events —from on-demand exercise Fitness Friday events to expert-led PD deep dives. Ready to build your PD community? Find an in-person event near you.

For more information about caregiving visit Parkinson.org/Caregiving.