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Informal Caregiving in Upstate New York

A caregiver is anyone who provides help to another person in need. Informal caregivers provide assistance to family members, neighbors, or friends whose chronic physical or mental impairments interfere with activities of daily living.


According to the CDC, between 2008 and 2016, the number of informal caregivers in New York state increased from 1.9 million to more than 2.4 million people. Upstate New York mirrors this trend. The number of informal caregivers in upstate New York in 2016 (730,000) is 43 percent higher than the number in 2008 (500,000).

A caregiver is anyone who provides help to another person in need. Formal caregivers provide care for pay, and include professionals like Home Health Aids. Informal caregivers provide assistance – usually unpaid – to family members, neighbors, or friends whose chronic physical or mental impairments interfere with activities of daily living.

Caregiving can be a rewarding experience, but it can also be very stressful. Whether you’re providing hands-on care or helping from afar, here are some tips from fellow caregivers to help you provide care for your loved one.

  1. Make a plan and put it to paper. Start planning by working with your loved one to complete necessary paperwork. Forms for a HIPAA authorization, or advance directives including a health care proxy, may need to be completed. For more information on advance care planning, visit CompassionandSupport.org. It may also be useful to consult with an elder law attorney to help protect your loved one’s finances should he or she need institutionalized care later.

  2. Be an advocate. It can be overwhelming when a loved one is diagnosed with a medical condition. Local chapters of health organizations like the Alzheimer’s Association, the American Cancer Society, and the American Heart Association can be good places to start when looking to learn more about a medical condition. If you’re able to go with your loved one to the doctor, take notes during the appointment. This can help you and your loved one remember more about the appointment. Taking notes can also help trigger questions you may have. At home, using a calendar can help you keep track of your loved one’s health and activities. That makes it easier to share the information with the health care provider at the next appointment. Choosing Wisely is another resource that can help with learning about whether certain tests, treatments or procedures are necessary for certain conditions.

  3. Get organized. Keeping track of documents can be challenging when medical bills, statements and educational materials start to pile up. Find a filing system that works for you and use it to stay organized. A filing cabinet or labeled folders can help you keep track of all the paperwork. You’ll also want to find out the system of the person you are giving care for. That way you can easily find the important documents that they were keeping track of.

  4. Manage medications. It’s important for your loved one to take any medications as directed by their doctor. For caregivers without a medical background, spending time looking up the medications and side effects can be helpful. The pharmacist or health care provider can also answer any medication questions. Using a pill box can also help your loved one remember to take the right medications at the right time. You may even be able to save yourself a trip to the pharmacy by signing up for prescription home delivery. Some home delivery pharmacies will deliver a 90-day supply of a monthly medication right to the home, saving you time and/or money. Talk with the pharmacist to learn more.

  5. Use community resources. Many caregivers stress the importance of having a strong network of community resources. But when you’re new to caregiving, it can be hard to even know where to start looking for help. Contact your local Office for the Aging for assistance with things like transportation, long-term care insurance, or housing resources.