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Tips for Caregivers: Learning About Dementia and Caregiving


Dementia caregivers face a lot of challenges as their loved ones lose their rational thought, so it is helpful to learn as much as possible about the disease and how to care for their loved ones with dementia. Fortunately, there is an abundance of available information.

My first step was to go to the Alzheimer’s Association website, Alz.org. It contains a lot of information and resources to help both loved ones and caregivers. They also have a number of online groups you can join. In those groups, you will find people who are asking how to deal with specific problems they face and others who have previously dealt with similar problems and have recommendations you might use.

Facebook also has several dementia groups. One of those is “Memory People”. It was started by Rick Philips who has dementia. The last time I checked, it had over 20,000 members. That means you are likely to find people who have had problems like yours.

There are also many books written by caregivers, professionals in the field of dementia, and a few by people who have been diagnosed with the disease. I read more than thirty such books and benefited greatly from their stories.

An excellent online source of books about dementia is AlzAuthors.com. It’s an association of more than 400 people who write about dementia in books and blogs. They also offer podcasts on specific issues related to dementia. As a blogger, I was invited to join. That opened the door to many other people whose stories helped me.

One of the benefits of being more informed about dementia and caregiving is that it can help caregivers accept the consequences of dementia, so they can focus their energy on supporting the happiness and safety of the loved ones they care for.

That may seem obvious, but it’s common for caregivers to be frustrated when their loved ones don’t remember things or mishandle things they could have easily done in the past. It is helpful if the caregiver does not display frustration or say things like, “I told you that this morning. Your appointment is at 3:30.” That is intuitive thought responding to the frustration. Rational thought can lead to other options. A better response would be to say, “It’s at 3:30.” And be prepared to say it again, and again, and again.

That leads to another tip for next time. See you then.

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A Very Special Day

Alzheimer’s has robbed us of many things, but Kate’s smile, Happy Moments, and the love we share are still with us.

Because we are with her so much, her primary caregiver and I get to experience the Happy Moments more than anyone else. Most of them occur in our apartment, a comfort zone for Kate.

The weekend was filled with Happy Moments. Saturday afternoon was special. That’s when I took these videos at Lowry’s, a Still Hopes café where we come after 3:30 every afternoon to get yogurt for Kate and visit with other residents. Everyone who stopped by saw more of the joy we share at home than they usually see. How fortunate we are, and I am very grateful.

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Tips for Caregivers Beginning Their Journey with Dementia: Making Plans

After thirty-seven consecutive years as a caregiver, I don’t claim to be an expert, but I do have a few tips to offer those who are caring for someone with dementia. The first is to develop a plan. Kate and I did that as a team, something I would recommend to every caregiver. I believe that set the stage for us to work together throughout our journey. Knowing that Alzheimer’s would have an impact on the rest of our lives, we began planning immediately after her diagnosis.

We spent several weeks (months?) talking about the potential changes and how we could adapt. We established a goal to enjoy life and each other as long as we could. We reflected on what we currently enjoyed: movies, music and theatrical performances, eating out, and travel. We binged on them as long as we could.

Although our first focus was on what we enjoyed, we also considered many of the practical things that might be involved. We contacted our attorney and accountant who helped us prepare for the legal and financial matters we might encounter.

We also thought about Kate’s care and what we should do when she might require in-home care. As a result of our caring for all four of our parents and my father’s girlfriend after my mother died, we felt it would be best to consider a move to a retirement community that would offer a variety of services that we might potentially need. Ten years later we acted on that decision. It was a good one. We have now lived at Still Hopes almost five and a half years and have never regretted it.

Don’t worry about making a detailed plan. In fact, something more general gives you the ability to make specific changes if and when that becomes necessary. At first, you need to be clear about the things that give you the most pleasure in life. That way you can focus on enjoying them as much as you can while you are still able to do so.