Study: Hope regained through connections in dementia care


A little hope can go a long way.

When I encounter families caring for loved ones with dementia, or those with loved ones in long-term care facilities, I see that hope can move mountains. It is the source of our psychological, spiritual and physical well-being.

A study explored the “hope experience” of family caregivers of persons with dementia living in long-term care facilities. Family was defined to include relatives and friends providing care in these facilities. Caregivers were found to lose hope and feel despair when they were unable to connect.

For the study, 23 open-ended face-to-face interviews were conducted with 13 family caregivers of residents with dementia in a long-term care facility. Participants “lost hope and felt despair when they perceived they were unable to connect with their family member” in the facility. When these family caregivers reconnected, something predictable happened: There was hope.

Other factors that gave rise to hope included accepting where we are, living life in the moment, believing in something, standing together and balancing dual worlds.

Even trained professionals can fall into this pit because caring for someone with dementia is a very difficult task that requires multiple kinds of training. That’s not to say facilities do not have training – they absolutely do. But to elevate the training to incredible levels, professionals must be “dementia-aware.”

In my talks and workshops that focus on dementia-awareness, I emphasize a truth that at first could suppress a sense of hope: I tell my audience that dementia is something that we cannot stop, fix or change. However, once we grasp this definition and apply it to our approach of dementia care, the opportunities for moments of hope only increase.

Here’s what I mean. When we manage expectations, we then maximize meaningful moments, powerful connections and experience purposeful and fulfilling relationships during our journey in dementia care. Families, professionals and patients can all benefit. Furthermore, these events lead to a new kind of hope that we didn’t think was possible before. This is the kind of dementia care I’ve dedicated my life to.

So, despite our inability to stop, fix or change this degenerative disease, we find hope from releasing ourselves from the overwhelming and impossible burden of trying to stop, fix or change dementia as we find a new path to proper dementia care. As the study states, hope is important and essential for family caregivers of persons with dementia residing in these facilities. Therefore, maintaining these strong relationships and connections with family members and the person in the facility is vital to our overall well-being.

For any questions, please reach out to me about my videos, webinar series and talks so you can become more dementia aware. My training is targeted to both family members and health care professionals. The Dementia Society of America is another indispensable resource. They aim to provide hope and help to individuals, caregivers and the community wishing to learn more about dementia and improving quality of life.

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