Care partners of people with dementia face difficult challenges. As the primary caregiver, friends, and family will look to you for information and guidance. Planning for care and taking care of yourself can help you adapt to constant changes.
The Patient Journey
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?”
Behavior & Personality Changes
People with dementia often act in ways that are very different from their “old self,” and these changes can be hard for family and friends to deal with. Behavior changes for many reasons. In dementia, it is usually because the person is losing neurons (cells) in parts of the brain. The behavior changes you see often depend on which part of the brain is losing cells.
Tips for Daily Life
Activities of daily living are divided into two major categories.
- The first, often called instrumental activities, include more complex types of activities such as paying bills, shopping, managing medications, preparing meals, and driving.
- The second category involves activities related to personal care and includes eating, bathing, dressing, getting in or out of bed or a chair, and using the toilet.
At the beginning of the disease, the person with dementia has trouble with the more complex instrumental activities. Changes in personality or behavior may impair their judgment. The person will likely start to need some supervision and support to help maintain function and safety. As the disease progresses, the person will have more difficulty with basic functions and will need more hands-on help and support from caregivers.
Professional Care
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.
Medical, Financial & Legal Planning
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.
Caregiver Well-Being
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 the person with dementia. Also, you may need to learn to accept help when it’s offered and ask for help when it’s needed.
Working with Your Family
As the primary caregiver, friends and family will look to you for information and guidance. Learning about 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.
Finding Support
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.
Tips for Hospitalization
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 project was developed to educate and connect healthcare providers with family caregivers of our patients with memory impairment.