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When Should We Start Respite Care?

I was honored to be one of the keynote speakers for the 29th Annual Alzheimer’s Conference, sponsored by Dothan’s Alzheimer’s Resource Center and Wallace Community College.  Part of my talk referenced a wonderful ministry embraced by churches and synagogues throughout Alabama: respite care. During a conversation I had with Katie Holland, the wonderful Director of Respite Ministry at the First United Methodist Church in Dothan, she mentioned that local clinicians were not referring people early enough in the disease to benefit. This bothered me, because I have seen first-hand the amazing benefits for both persons with dementia and their care partners.

What is Respite Care?

Respite care provides a “break” for the care partner. Informally, friends and family members provide respite. They stay with the person with dementia while the care partner runs errands or attends to their own health needs. Some home health agencies and long-term facilities offer formal respite care, either in the home or in a long-term care setting.

Respite Care Ministry

Faith communities offering respite care via a ministry do things a little differently. They offer programs FOR people with dementia. Many use a “volunteer” model, where EVERYONE is identified as a volunteer. There are trained professionals and volunteers who provide supervision for the persons with dementia while also interacting in a friendly and social fashion. These programs provide opportunities for people to socialize and contribute within their ability and comfort level. Most of the programs run for four hours and provide a mid-day meal. There are intergenerational activities, especially if a daycare or preschool program is on-site. Pet-assisted therapy may also be part of the program.

Optimal Time to Introduce Respite

The optimal time is early in the disease. Persons with dementia benefit most from the increased stimulation and socialization earlier in the disease. Plus, many respite programs have restrictions: the person with dementia must be able to move independently (or move around in a wheelchair independently), feed themselves, and use the bathroom independently.

Someone in the early stage may initially resist because they are concerned about the stigma: “If I go there, everyone will know I have a memory problem.” This is where the volunteer structure comes in handy. I respond (truthfully): “Some volunteers have memory problems, some don’t. When I stop by, I cannot tell which of the volunteers are forgetful and which are not.”  If the person with dementia realizes his or her memory is unreliable, I tell them point-black, “Volunteering will help your memory.” This is another truthful statement supported by empirical data: people with dementia who self-isolate or who disengage socially tend to have worse declines than people who remain socially active and engaged.

The bigger challenge occurs when the person with dementia does not realize that their memory and other cognitive functions are declining. These people may be very sensitive toward attempts to take them to respite programs; one man accused his wife of “trying to get me into a nursing home.” In this case, I will weave the person’s background (occupation or hobbies) into my suggestion that they volunteer. For example, I often tell retired professionals, “This place is looking for volunteers and I think you could be an asset. They may benefit from your experiences.”

Benefits for the Person with Dementia

Once the person with dementia attends a session or two, he or she begins to look forward to respite. One lady with dementia told me, “I love going (to respite). There are people like me there, and some are worse off. I feel loved.” Another carer shared, “My husband wakes up every morning and asks if we are going to (respite).” I honestly believe consistent participation in respite activities slows down the memory decline. Other benefits include upbeat moods and better quality of life. I wonder if another benefit is a temporary escape from the role of “care recipient.”

Benefits for Carers

When my children were small, I recall the sheer pleasure of going grocery shopping BY MYSELF. Care partners feel the same way. They love their family members but it is so much easier to just get things done as a solo act. Carers often neglect their own health. With scheduled respite, one can make (and keep) important medical and dental appointments. And then there is “down time.” Everyone needs a day here or there with no appointments (unless it is for a facial or massage) to recharge. Or go to the gym or take a walk without constantly worrying about hurrying back “just in case.” Respite provides not only opportunities for the carer to attend to their own needs; they can do so peacefully, knowing their loved one is in a safe, secure, and happy environment.

Are There Respite Care Ministries in My Area?

The easiest way to find out is to search the internet using the term, “respite care ministry” and your city or location. The next stop would be your local Area Agency on Aging.  You can also reach out to your local Alzheimer’s chapter. A NOTE OF CAUTION HERE. In the late 1990s, many of the local Alzheimer chapters dis-associated from the national group  to keep donations 100% LOCAL with minimal overhead. For example, we have Alzheimer’s of Central Alabama (in Birmingham AL) and the Alzheimer’s Resource Center (in Dothan AL). Donating to the national Alzheimer’s Association does not help these local (and very important) groups.

Want more information? I provide monthly webinars and individual coaching for caregivers who would like to learn more about dementia, and how to successfully deal with frustrating or scary behaviors. Click here!

Categories: Alzheimer's Disease

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Dr. Rita Jablonski

Rita Jablonski, PhD, CRNP, FAAN, FGSA is a nurse practitioner, researcher, tenured professor, and former family caregiver. Her research and practice involve all aspects of dementia management; she is best known for non-drug strategies to address dementia-related behaviors.

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