In this, the initial blog by Dr. Gelber, he introduces the reader to Alzheimer’s disease and how this dreadful disease affects family members’ interactions and care. Be on the lookout for additional excerpts from Dr. Gelber’s new book.
DEMENTIA: This is the silent dread for people who have had a parent or grandparent diagnosed with Alzheimer’s disease. A change in memory or clear thinking raises suspicion and worry of having some sort of ‘family gift’. Statistically, the older you live, the greater is the chance that you will end up with some form of dementia, most likely Alzheimer’s disease. Dr. Gelber’s book addresses the progressive changes that Alzheimer’s disease causes in the person with the disease, in the family, and in others intimately involved in care. At this writing (2012), there are approximately 10.9 million who are in care-giving positions with people in the grip of Alzheimer’s disease, the debilitating killer of an estimated 5.4 million (and growing) people each year. Family members provide more than 17 billion hours of unpaid care, valued at $202.6 billion, according to latest figures from the Alzheimer’s Association. Multiply that number by 3, 4, or 5 and that comes close to those affected by the disease in some personal way. Alzheimer’s disease is the sixth leading cause of death in the United States, at a cost of $183 billion per year (Rabins Spring 2012). There is no cure, there is no reversing the course, and there is no shying away from the obvious truth: Alzheimer’s is a family disease where one family member will die. The statistics mentioned above will change. With no known cure in sight, the impact of Alzheimer’s disease will continue grow and play a major factor in family planning. In this book I include as family all who are in continuing contact with those afflicted and who provide some kind of care that supports health, safety, and nurturing during the disease process. I am not in a position to measure “care”—you are, and you know by your own standards whether you are “family.”
Suffice it to say that the family understands how much time, effort, and physical and mental anguish, and joy can be involved in caring for those with this killer disease.
People who are thinking clearly are able to problem-solve independently, learn new information, retain the information, and perform self-care with independence. They function best when operating with a familiar schedule, when they can make independent choices as appropriate, and have time to learn new and complex tasks with reduced background interference. Being deprived of personal independence is a powerful loss; it means losing capabilities that healthier people take for granted. Driving a car, selecting items at the grocery store or clothes for the day—such simple choices as these become challenging and eventually are lost for a person with dementia. The flip side of losing independence is the increase in dependence on others, most notably the family.
Early in the disease process I may get lost driving in areas vaguely familiar to me and get stressed in high-stimulation situations. With moderate Alzheimer’s, if I am still driving,
I will get lost driving in familiar places, not know how to get home from the market, and become dangerous on the road. With advanced Alzheimer’s I will lose understanding of the use of a car. These types of changes hold important indications for how family members respond, the level of independence remaining for the person, and general implications for outside interventions and treatments. Patterns in families are established early, when a marriage is new and children are young. Communication, identified roles, and accepted norms define how members of the family work, play, and nurture one another. These are life-long patterns that repeat with little change regardless of time and age. Most adult children, when returning to their parents’ home with their own children, will have moments when they accept the child role in front of their children. When a senior family member develops dementia and can no longer function at the previous cognitive level, role changes occur that challenge others in the family to adjust their established ways. These role changes, in turn, produce conflicts within the family system. The increased loss of independence of the person with Alzheimer’s creates growing dependence on family members providing direct care. The “role reversal” puts added stress on the entire system and confuses younger children when their parents begin “parenting” the children’s grandparents.
Another change that occurs is that of alliance. The ways we connect with our family at primary levels—how we socialize, make pacts, and share information—are constructed by the development of values and morals formed as children. The progressive cognitive limitations caused by the disease begin to erase established alliances formed by families and through friendships as the person with Alzheimer’s misinterprets and distorts information while forgetting the connections to significant others.