Caregiving & Support

Creating a plan for caregiving, and updating it regularly, will help you determine what care you can and cannot provide. It will also help you come up with an answer when someone asks “How can I help?”

Living with the symptoms of neurodegenerative disease can be frustrating, difficult and even scary. The first step is to recognize that these behaviors are part of the changes in the brain. The person has little or no control over them and isn't behaving this way on purpose. Often times, behavioral and environmental changes can help prevent or stop these behaviors. For some symptoms, medication may be helpful.

Activities of daily living are divided into two major categories. The first, often called instrumental activities, includes more complex types of activities such as paying bills, shopping, managing medications, working and driving. The second category is activities related to personal care and include eating, bathing, dressing, getting in or out of bed or a chair and using the toilet. In the beginning of the disease, the patient will have trouble completing the instrumental, complex activities. As the disease progresses, the person will have difficulty managing the more basic functions and will need help from caregivers.

Most family caregivers reach a point when they realize they need some level of professional assistance at home. Home care options can range from running errands to skilled medical care.

The goal of palliative care is to relieve the pain, symptoms and stress of serious illness. Palliative care may be provided at any time during a person's illness, even from the time of diagnosis. You can receive palliative care whether you are at home or in an assisted living facility, nursing facility or hospital.

Hospice care provides palliative care to relieve suffering and improve the quality of life for people who are expected to live for about six months or less. Like palliative care, hospice care can be provided whether you are at home or in an assisted living facility, nursing facility or hospital.

Legal, financial and health-related planning is for everyone, regardless of health status. Putting a few basic documents in place can give guidance to your loved ones and ensure your future well being. These documents define how you want to be medically cared for in case you are not able to speak for yourself. We often assume that our loved ones know our end-of-life plans but have never had a discussion about it. In our experience, families are always grateful that they dealt with these difficult questions early on, rather than at the last minute.

One of the biggest challenges for caregivers is finding the time and energy to take care of your own health. Taking care of yourself will allow you to provide better care for your loved one. Also, you may need to learn to accept help when it’s offered and ask for help when it’s needed.

As the primary caregiver, friends and family will look to you for information and guidance. Learning about the neurodegenerative disease will help you to answer some of their questions, but you may need a different way to explain it to children. Also, family dynamics can change with a serious illness. Being prepared for different reactions will help you avoid destructive cycles.

Caregivers of patients with dementia face difficult challenges. A support group can provide a safe place to express your own needs and deal with painful emotions, including aggression, anger, mourning and guilt. It is a relief to know you’re not alone. One of the most valuable benefits of being in a support group is learning about coping skills and helpful resources from your peers. Every person's experience is so different, yet there are similarities that often only other caregivers can relate to. Many caregivers find new friends and social contacts in support groups.

Hospitalization of a patient with dementia is a potentially stressful experience often associated with negative outcomes for both the patient and family. The “Partner With Me” (PWM) project was developed to educate and connect healthcare providers with family caregivers of our patients with memory impairment.