Learning how to care for a loved one with Parkinson’s disease.
More than 1 million people in the U.S. are living with Parkinson’s disease, a chronic neurological condition that worsens over time.
For those caring for these individuals, the disease can be overwhelming and scary. Two Cedars-Sinai neurologists, Dr. Michele Tagliati and Dr. Echo Tan, say the approach taken by caregivers can make the difference between strengthening or straining relationships.
Here are tips for caregivers and others who look after patients with Parkinson’s disease.
The diagnosis of Parkinson’s disease is based on the clinical observation of at least two of three main symptoms, which can include tremors at rest, reduced agility of fine movements and muscle stiffness. These symptoms typically affect only one side of the body early on and may be associated with other problems such as sleep difficulties, constipation, loss of smell, anxiety and depression.
- Be available, listen and ask questions during the initial appointments.
- Bring up details about symptoms. Having another independent point of view is always important for the physician to determine the most pertinent problems. Sitting down with your loved one beforehand to prepare a timeline of symptoms may help.
- Take written notes during the appointment. Being informed of a Parkinson’s disease diagnosis can be overwhelming for your loved one. There may be a lot of information that is relayed about tests or follow-up doctor visits. It is difficult to remember all of these details, so it will be important to write down information.
- Establish the roles and dynamics of your care team. Will you oversee making appointments or just accompany your loved one for moral support? Who else will be involved in the care? Will you oversee the dispensing of medications?
- Understand that a new diagnosis of Parkinson’s disease may alter your relationship with your loved one because of the extra role you will assume, but don’t let it overshadow the existing emotional connection between the two of you.
- Look for support in the community. There is a large Parkinson’s disease community around you. These new friends are more than willing to share their experiences, accumulated knowledge and a sympathetic ear. They have the potential to become part of your care team as well. Search online or talk to someone with a local aging council to find support near you.
Research indicates healthy lifestyle choices can be beneficial in the daily management of Parkinson’s disease, including slowed progression of the disease and improved quality of life. Therefore, a new diagnosis of Parkinson’s disease often comes with changes in the lifestyle that you and your loved one may want to consider.
- Encourage your loved one to maintain a regular exercise routine. This may take constant reinforcement as the individual finds it more difficult to control movements. Sometimes it helps to participate in routines so that your loved one has more motivation to remain active.
- Don’t be discouraged or distraught if your loved one resists your attempts at motivation. It is not a personal rejection of your love or concern. Perhaps involving a different member of the care team – for example, a physical therapist or an exercise trainer – will help both of you maintain a healthy lifestyle.
- Assess what lifestyle habits need to be changed for your loved one (and perhaps you as well). Eating habits often need to be changed for the entire household.
- Encourage a healthy sleep routine. Poor sleeping habits can be detrimental for patients with Parkinson’s disease and may contribute to a worsening of the disease, including memory loss.
The treatment of Parkinson’s disease is currently based on the replacement of missing dopamine in the brain, providing a beneficial effect on motor abnormalities such as tremors, slowness and stiffness. Other symptoms including depression, fatigue, constipation and sleep deprivation also may require medical treatment.
- Double check the type of medications being taken and at what times they are being taken. Consistency is very important for medications taken for Parkinson’s disease.
- Remind your loved one to bring a list of medications, or all pill bottles, to follow-up appointments to review with the nurse or doctor.
- Ask questions about expected benefits and possible side effects of prescribed medications. Sometimes a person with Parkinson’s disease won’t know the right questions to ask or will be unconcerned about symptoms that may worry you.
- Become familiar with medical insurance policies and be ready to eventually take over managing the family finances and medical bills. Local support groups and Parkinson’s disease foundations offer useful educational resources regarding medication coverage, transportation and physical therapy, among other things.
- Acquaint yourself with your work’s medical leave policy since you may need to take time off from work to accompany your loved one to appointments or take care of them at home.
One of the most feared features of Parkinson’s disease is its progressive nature, which in many cases may lead to physical and cognitive disability. Progression is usually very slow and may take more than 10 years before causing serious daily problems.
- Provide emotional support. There may be moments of discouragement as well as anxiety or depression, which are often an integral part of the disease process. Try not to be overprotective. Remember, Parkinson’s disease patients must fight to maintain their mobility and independence. This may involve re-learning to perform routine tasks like walking or speaking loudly.
- Keep track of how much assistance your loved one needs over time and the responsibilities you are assuming on his or her behalf. Ask yourself if your loved one needs another caregiver besides you to provide 24-hour assistance.
- Make sure your loved one is keeping doctor appointments and taking medications as prescribed.
- Take time to take care of yourself. You can’t care for someone else over the long haul unless you care for yourself first. Learn to recognize your own signs of fatigue and give yourself permission to take a break, whether it be for a couple of hours or days while someone else takes over your caregiving role.
- Find emotional support for yourself. It is difficult to watch someone you love change. Know where you can find respite care and time to relax.
Echo Tan, M.D., is a neurologist in the movement disorders program at Cedars-Sinai. She specializes in all forms of movement disorders, including tremor, dystonia and Parkinson’s disease. Tan has lectured nationally on various movement disorder topics including new wearable technologies for diagnosis and management of Parkinson’s disease, as well as dystonia and its treatments. She has co-authored articles with Dr. Michele Tagliati and presented research at both national and international conferences such as the Movement Disorders Society annual meeting.
Michele Tagliati, M.D., is the Steven D. Broidy Endowed Chair for movement disorders, director of the Parkinson’s disease program and vice chair of Neurology at Cedars-Sinai. Tagliati has published approximately 100 articles in prestigious medical journals, authored more than 20 chapters in medical textbooks, and written several articles for online publications. In 2007, he co-authored the book Parkinson’s Disease for Dummies.