Embracing Alzheimer's Disease

A friend who works in a special needs classroom at our middle school was talking about a delightful new student they have in their program this year. She mentioned that in spite of his challenges, the student is a content, personable, and humorous young man who is a joy to be with. “His parents really embrace who he is,” she went on to say. “You can always tell the special needs students who have parents like this.”

As I reflected on our conversation, I began to think about the parallels between the experience of a family such as this and those who are coping with the challenges of dementia. Nobody wishes that their children will be born with special needs and clearly there is a process of adjustment that families experience. Perhaps there is grief related to “what may have been.” When dementia touches our family, grief and sadness are inherent in the process. As caregivers, we grieve the loss of the person as they were, the change in our relationship, our dream for what this time in our life would be. But, just as the parents described above, if we can begin to move beyond a place of grieving what was to accepting what is, it opens up new opportunities for us as caregivers as well as our family members. We can begin to not just survive, but to thrive.

So what does it mean to “embrace” the person with Alzheimer’s disease?

It means that we stop trying to “fix” every symptom they have. As we understand the disease process, we develop empathy for our family member who is struggling in a world that no longer makes sense to them. We recognize that forgetfulness, repetition, and many potentially annoying behaviors are really “normal,” given the confusion, anxiety, and loss of control that the person is experiencing. The empathy we develop for our loved one allows us to accept these symptoms and not feel compelled to correct or change them.

It means we seek to provide an environment that promotes self-esteem and dignity. Embracing the person with dementia means that we take care not to highlight their losses by asking questions that rely on short-term memory, or expect them to do tasks they can no longer accomplish. We speak to them as adults, avoiding a demeaning tone of voice. We find creative ways to distract them rather than telling them “no,” which often results in a power struggle. As much as is reasonable, we try to do tasks “with” the person rather than “for” them, recognizing that feeling productive and useful is a basic need that doesn’t change just because there is a dementia diagnosis.

It means we plan daily activities in such a way as to lessen anxiety and frustration. We establish a daily routine that is predictable and comforting, recognizing that our family member will function best when the environment is familiar. We avoid large groups or highly stimulating environments that may provoke anxiety and highlight losses. We use patience, validation strategies and encouragement to make days go smoothly. We are sensitive to their feelings and needs, recognizing that these are often expressed behaviorally, not verbally. We understand the need for our family member to seek security and comfort, given the feelings of anxiety and loss of control that accompany the disease.

It means we take time to enjoy and value the person as they are now. Embracing the person with Alzheimer’s disease means that we take time to reminisce, to laugh together about the funny things that inevitably happen. It also means we value the beauty of the moment, even if it is quickly forgotten. We take pleasure in simple activities together—enjoying a favorite flavor of ice cream, singing a well-known hymn, or watching ducks on a pond. We focus on remaining abilities, rather than on what has been lost, and celebrate a life well lived.

Embracing the person with Alzheimer’s disease doesn’t mean our family member will always be happy, or never experience challenging behaviors or deterioration of their condition. Nor does it mean we as caregivers will have the time, energy or patience to be our best every day. It does mean that as caregivers, we can be comforted by the knowledge that we have helped our family member be the best they can be and that we have stood by them to provide the most valuable gift there is—unconditional love and acceptance.