Help for families

Although many different conditions can cause dementia, one thing is certain: You need help to care for a person with memory loss. As your relative’s symptoms get worse, the emotional and physical demands will tax your own ability to remain healthy.

Surprising situations arise
Your relative may do things that you never would have imagined. It can be crazy making! Plus, toward the end of life, there are difficult ethical decisions to confront. The combination of these factors is why you need to get help from others.

We suggest the following:

• Get a diagnosis. Some causes of dementia can be treated. Some medications can slow the progress of symptoms. Even if there is no cure, these medications can result in a better quality of life for you and your loved one. Talk to the doctor about a dementia evaluation. A nurse care manager can help guide you through the process.
• Educate yourself. Once there is a diagnosis, learn as much as you can about the condition. Ask the doctor for printed information. You can also check out the website of the national organization dedicated to that illness.
• Work with an estate-planning attorney. Draw up a will or trust while the person you care for still has decision-making capabilities. Also a durable power of attorney document. It assigns decision-making responsibilities for managing finances when they are no longer able to do it themselves. (Without this, you may not be able to access funds to pay for needed care.) Also, work with an attorney to create an advance directive. This is a set of documents that names a healthcare decision maker (sometimes called a “healthcare agent”) and provides instructions for the kind of treatment decisions your loved one would prefer at the end of life. For instance, do they wish to have everything done to keep them alive, or would they prefer not to prolong the dying process and instead, have a natural death?
• Develop a plan for managing your stress. More than any other condition, caring for someone with dementia demands a lot from family caregivers. Create a plan to manage and reduce your stress. Family caregivers who feel stressed have much greater health problems than those who do not feel as stressed. The key is good stress management.
• Join a support group. The Alzheimer’s Association offers support groups for all family members coping with dementia, even if the care receiver does not have Alzheimer’s disease. There are even support groups for persons who are in the early stages of the condition. Many other organizations offer disease-specific support groups for family members. You can even find online support groups that connect via email. And support groups that meet via video conferencing for added convenience.
• Look for support services. Anything to lighten your load. In the early stage, your family member may be able to live independently, with the help of support services. For instance, a bonded bill-paying service can handle balancing a checkbook and organizing monthly bills for payment. Check out transportation programs and meal programs to help when independent living is still possible, but assistance would make it better. A nurse care manager can do an evaluation to help you identify the level of dementia and which local services would offer the most appropriate support. You can delegate care coordination tasks to a nurse care manager and have them help with medication management or communicating with doctors.
• Take breaks. Everyone needs breaks. It’s not selfish. It’s essential! Dementia caregivers are frequently the subjects of stress research because caring for someone with memory loss is incredibly stressful. Take time away on a regular basis. You will be a better caregiver when you return. And you will increase your stamina for the long haul. Whether it’s an hour or a couple of days, you need time when you are completely free of caregiving responsibility. Arrange to have friends or family visit with your relative. They can take your loved one to the park, to church, or out for a drive. Or find an adult day center. These programs offer daytime activities and supervision for persons with dementia. Some even help with transportation by providing pick-up and drop-off services right at your door.
• Consider in-home care. Having help come to the home is the first choice for many families. However, it can be expensive. And there are challenges to hiring paid caregivers on your own. Talking with a nurse care manager can also be helpful. These professionals understand employment laws. They can help you select a paid caregiver situation suited to your family member’s needs and resources.
• Enroll in the Alzheimer’s Association’s Safe Return™ program. This service is for families who are worried about a relative with dementia wandering away and getting lost. It allows you to create a profile of your loved one, including uploading recent pictures and listing emergency contact information for yourself and others. A medical ID bracelet, necklace, or smartwatch can be worn to assist community members who might find the person you care for. Plus, some smartwatches can be set to display GPS coordinates to help locate a person who has wandered off.
• Consider a new living situation. There may come a time when your relative needs more round-the-clock support. A long-term care facility may be more cost effective than in-home care. Many different levels of care are available. Assisted living communities meet the needs of persons who are still fairly independent. Memory care communities provide security and specially trained staff to care for persons in the later stages of the disease. A nurse care manager can do an assessment of your loved one and talk to you about local options that fit your unique situation.
• Consult with palliative care or hospice. In the later stages, the person you care for may develop other conditions that might respond well to treatment (cancer, for instance). Unfortunately, with dementia, your loved one may not understand the concept of enduring painful or uncomfortable side effects in order to gain a longer future. Hospice and palliative care programs can help you make these decisions and offer comfort care so your loved one can have the best quality of life possible.
• Support the spouse or partner. If your relative lives with a “significant other,” that partner is likely under a tremendous amount of stress. Dementia causes profound changes in personality and behavior. Your relative may no longer recognize their spouse. They may treat the spouse rudely or make overtures to others. The relationship is likely to become very one sided. The “well spouse” does all the giving and the person with dementia only receives, often without showing any gratitude. The manners part of the brain simply stops working. A spouse or partner often must function like a nurse while dealing with their own feelings of loss and frustration. If this is a later-in-life union, the demands of caregiving can be especially challenging. Add to this a partner’s own health problems and the combination can put your relative’s spouse at risk. In fact, the illness and mortality rate for stressed partners of persons with dementia is significantly higher than for partners whose loved one does not have dementia. For all these reasons, stress relief is especially important for caregiving spouses and partners.