Avoid denial. It is commonly thought that the people who are the most successful negotiating the dementia journey are those that accept reality and work to make the best of it. That was not our experience. Gayla’s denial of Alzheimer’s made her positive attitude possible. Whenever she was forced to acknowledge Alzheimer’s, she invariably turned within. She became quiet, secretive about her feelings, and sulked. Each case of dementia is unique, but denial allowed Gayla to be more like her normal self. It was a positive force for us.

Be honest. Don’t lie. This advice assumes that people with dementia can process uncomfortable truths rationally, but they can’t. In some cases, truth causes pain, grief, confusion or agitation. It is better to use compassionate communication in which your goal is to help them feel comfortable and content. Honesty is not the highest virtue in dementia caregiving. Emotional well-being is.

Stay physically and socially active. Being active is important, but it can also be overdone. It can overwhelm people with sensory or anxiety issues. People with dementia are often more comfortable and content when they have opportunities to live in their own worlds. A quiet walk or a familiar song may be more beneficial than a structured class or an unfamiliar outing. Gayla had always been outgoing and engaged, but when Alzheimer’s took over and she went bowling with a large group, she was totally overwhelmed by all the people, the noise, and the confusing environment. She was as distressed and unhappy as I ever saw her.  

Insist on healthy, balanced diets. This is appropriate advice for parents raising children. But for people with dementia, quality of life trumps nutritional metrics. Struggles over food lead to agitation and conflict. To me, it makes more sense to focus on enjoyment of food, hydration, and maintaining weight. Comfort foods and sweets are among the few things that bring joy into our loved one’s lives.

Keep loved ones home where they are safe, secure, and you can monitor their care. Caregivers are generally reluctant to move their loved ones into memory care facilities. We feel certain that they will resist the change, the costs seem prohibitively high, and there is uncertainty about the quality of care that will be provided. These all conspired to make me think that Gayla’s move was always two years in the future. But progressive decline and sound professional advice finally triggered the decision to make the move, and it turned out to be beneficial for both of us. I finally realized that Gayla’s condition had declined to the point that she needed full-time care from professionals who were qualified to meet any emergency. The move to Balfour’s memory care facility gave me my life back and gave Gayla the support that I could not provide 24 hours a day. My recommendation is that you align yourself with a professional who is knowledgeable about dementia and can provide independent advice that will improve your decision-making capabilities.