Finding a Caregiver for Someone with Parkinson's
Life with Parkinson’s disease (PD) often requires assistance and support. This care varies by the stage of disease and ranges from skilled hands-on work to simple errands. Handling all of this may be too much for one person. When this is the case, getting outside help can be the best solution.1
Building a caregiving team
To keep any one person from getting overwhelmed, it helps to build a team of people who can provide care. This could include one or more main caregivers, backup carers for emergencies or respite (taking a short break), and people who can assist in other ways.2
Think about who is best suited for what needs doing. For example, a nephew who wants to help but can’t provide hands-on care could do food shopping, driving, or taking notes at a doctor’s appointment. Remember the need for emotional and social care, too. Consider people who could come over just to watch a movie or have a cup of coffee with you.
Managing team members may require juggling multiple schedules. Google’s shared calendars and group mailing lists are free tools that you can use privately for your team. Another service is Lotsa Helping Hands, which offers shared calendars for care team coordination.
Looking for caregivers
Where can you find PD caregivers? It depends on the care you need. It might be as easy as walking next door, or it may require seeking out people with specific training.
Ask family, friends, and neighbors
People who are already part of your life could be the first ones you look to for caregiving. Be mindful about their strengths and weaknesses, though, and respect how much help they are capable of providing.
Look for volunteers
Volunteer caregivers may come from students, retirees, community service groups, and other local people with available time and a desire to help. Check your area for volunteer groups, or try searching the National Volunteer Caregiver Network.
Get referrals from people you trust
One method for finding caregivers is to ask other people who use them or who work with them. If you belong to a PD support group, talk to other members about their caregiver teams. You can also ask for recommendations from your doctor, nurse, social worker, therapist, or other medical professional.
Search through an organization or agency
Government departments, non-profit organizations, and other groups can connect you to a number of resources. Some of them can also give you advice or help with paying for skilled care. Resources in the United States include:
Many cities, towns, and regions have a program that offers information and resources on care for seniors.
This search tool is provided by the US government’s Administration on Aging and can connect you to various care options. You can also call the service at 1-800-677-1116.
American Parkinson Disease Association’s community resources
APDA maintains a network of state chapters and centers for information and referral. Use their website to find out what’s available in your area.
Family Caregiver Alliance offers this state-by-state listing of options for care, including government programs, non-profit organizations, and private groups.
Visiting Nurse Associations of America - Find a Provider
You can search for home-based care options in VNAA’s list of member groups and agencies, organized by state.
National Adult Day Services Association - For Caregivers
An adult day center can be a great help for caregivers who also work or who need respite care. This website lets you locate nearby services and helps you evaluate whether they are a good fit.
This search tool is offered by the ARCH National Respite Network and Resource Center. They also provide resources for seeking funding and choosing the respite care that matches your needs.
Asking the right questions before taking on a caregiver
Before starting the search for a caregiver, it’s important to figure out your care needs. For example:
- What care tasks do you need help with?
- How often do you need help with care? For how long - a few hours, an evening, overnight?
- Does the care involve personal tasks, such as helping with getting dressed or bathing?
- Do you need someone with medical training?
Check the needs and preferences of the person who will receive care. Will language or communication pose a problem? Is the gender of the caregiver important? Also, be aware of what people will need to know about your living situation. Do you have pets? Is there smoking in your home? Do you have religious requirements?3
Taking on a paid caregiver with special training raises additional questions, such as:
- What are their credentials?
- Is their training up to date?
- How much experience do they have? Do they have PD care experience?
- Who are their references? If they work for an agency, are there reviews or ratings for it?
- What are their fees, and how is payment handled?
Family Caregiver Alliance provides thorough information on hiring in-home help. This webpage walks you through the steps of assessing your needs, interviewing, carrying out background checks, and arranging payment.
National Parkinson Foundation’s caregiver fact sheets also offer pointers on hiring care as well as organizing volunteers and family members as part of your team.
Questions?
Looking for care resources can be daunting. If you have questions or aren’t sure where to begin, try this helpline:
Parkinson's Foundation Helpline
Phone: 1-800-4PD-INFO (1-800-473-4636) - Mon-Fri, 9am-6pm EST, English and Spanish
Email: helpline@parkinson.org
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