I’ve seen dementia caregiving up close and personal, and I think it is one of the most demanding roles on the planet. Acclaimed author, Toni Morrison once said, “Not knowing it was hard; knowing it was harder.” She was not speaking of dementia caregiving, but she easily could have been. As difficult as it can be for most of us to understand the nuances of a complicated disease like Alzheimer’s, it pales in comparison to having to accommodate those nuances in order to provide your loved one care.
The stressors associated with dementia caregiving are numerous and varied. Chief among them can be adapting to a new role and identity as a caregiver; responding to unforeseen changes in behavior from the care recipient; and managing feelings of isolation and/or inadequacy. So how does a caregiver navigate such a complex array of needs and demands? Well, fortunately, a variety of resources exist to support people with dementia and their caregivers. An important first step is to learn what those resources are and at what stage of the illness they are appropriate.
Perhaps one of the most beneficial support services for people in the early and middle stages of dementia is adult day care. Adult day care centers provide these individuals with activities that support their strengths, abilities and independence as well as opportunities to socialize in a safe environment. These centers vary in type, so finding one that is dementia-friendly will provide the caregiver with the freedom to do the things that are necessary to keep life moving forward while ensuring that the care recipient’s needs are also being met. Going to work, running errands, having quiet time for meditating or social time for visiting with a friend are just some of the options made possible by utilizing adult day care.
Another service that can greatly assist caregivers is in-home care. It is not uncommon for many of us to feel that there is more to do in a day than there are hours to get it done. But, if you are a caregiver, this can be especially true and in-home care services can be a great help. There are different types of services provided that can be helpful at almost any stage, but most commonly they are utilized in the middle and late stages of the disease process.
Companion services, for example, provide a companion who visits with the care recipient and engages them in recreational activities in the home. Personal care services help with bathing, dressing, toileting, eating, etc. Homemaker services help with housekeeping, shopping or meal preparation. Lastly, skilled care is commonly provided by a home health care agency and helps with common medical needs like wound care, physical therapy, and assistance with medications. Skilled care services have to be ordered by a physician, but the other in-home services do not.
The last resource I will mention is that of support groups. Individuals in the early stage of a dementia as well as any caregiver along the continuum of care may find this resource valuable. These specialized groups provide a safe and supportive environment for discussing virtually every aspect of living with or caring for someone with a dementia. Often, those who participate in a support group discover that the opportunity to connect with others who share a similar experience can feel profoundly supportive, restorative and affirming.
So now that you know what is possible, I encourage you to explore your options. Find out more about the support services I’ve described, as well as others, by checking with your local area agency on aging, or the Alzheimer’s Association www.alz.org.
Beverly Kimmons is the Director of Diversity Initiatives for the Greater Illinois Chapter of the Alzheimer’s Association. She works with underserved communities, providing education and care consulting to individuals and their families, empowering them to manage Alzheimer’s disease and other dementias more successfully.