Too often it is considered that once a person has been diagnosed with Alzheimer’s disease, life is over and the person that was, is no more. However, if you speak with people in the community who have been diagnosed with Alzheimer’s disease, their stories are quite different. They have a diagnosis (and of course the anger, questioning and bargaining) of any life-limiting illness occurs, but what most people come to terms with is that they are living with Alzheimer’s disease. They are still the same human being they were before the diagnosis, but they are well aware of the changes that are happening. Most people learn new strategies around some of the losses, some become frustrated easily as their brain will not do what it used to – but they are still the same people. They are parents, grandparents, siblings and friends.
What people who have developed Alzheimer’s disease do not need are people assuming that they are incapable of knowing what they want or what they want to communicate to those of us who do not have Alzheimer’s disease. Their skills and abilities that remain are precious, they want to use these, not have them taken away prematurely. They want to enjoy what is available to them in their lives – friendships, love, acceptance and feelings of worth. Every day is an opportunity to make a new memory. Their lives may be changing and becoming narrower, but they do not want to exclude others from their lives. They are on a very special journey from which there is no return. They need us to come with them because their world is different from those of us who do not have Alzheimer’s disease. As one gentleman described it, ‘it is like living in a balloon, and being stuck in there’.
To gain insight into the lived-experience of having dementia, take the opportunity to view the following YouTube. You will see Alzheimer’s disease and dementia through the eyes of those living life with the disease.