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Alzheimer's: Stepping Into The Leadership Role
By Daniel Kuhn, LCSW, MSW

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Since the person with AD no longer possesses the mental skills to be completely independent, a special brand of leadership is called for. At least one person must assume overall authority for ensuring the well-being of the person with AD but it is best to include others too if at all possible. Much work is involved in addressing basic physical needs like food and shelter as well as the psychological and social needs discussed in the previous chapter. You need not be afraid of taking on this important leadership role or a major part of it, although it may feel awkward at first. The person with AD needs your help. If possible, it is best to share this role with someone else or at least to delegate some of the responsibilities to others who are willing to help and support your efforts.

Whether the person with AD is your spouse, parent, sibling, or in-law, a shift in the balance of power must occur in your relationship. You may feel uncomfortable at first with the term power. Yet the dynamics of power, influence, and authority exist in every relationship and can be used constructively. The change in power balance derives from the fact that the person with AD needs protection from the risks posed by the disease and can no longer meet her or his needs alone. Because of impairment in memory, thinking, or other brain functions, the person with AD no longer has intellectual equality with others—an unfortunate reality. As one person’s role in the relationship changes and personal control diminishes, the other person’s role must change in corresponding ways.

Any person giving direction and assuming greater responsibility in a relationship is exercising more power than the other person. This does not mean, however, that the dignity of the person with AD should be diminished or ignored. On the contrary, preserving his or her dignity becomes the utmost priority. In taking leadership, your job is not to dominate the life of the person with AD, but to help minimize the affected person’s disabilities and maximize his or her remaining abilities. This implies not only caring for the person with AD but also caring about the person. Ultimately, the leadership role is about meeting the needs of the other person.

It takes self-confidence to assume leadership on behalf of another adult. It also takes extraordinary empathy, patience, and understanding to exercise this powerful role in a loving way. Despite the inequality of the relationship, the self-esteem of the person with AD must be upheld. Otherwise, feelings of embarrassment, depression, and frustration may arise, and conflicts may develop. In Counting on Kindness: The Dilemmas of Dependency, Wendy Lustbader describes the finesse required of the leader: “The best assistance is that which is unobtrusive. Helpers who quietly get things done, rather than announcing their efforts, leave a dependent person’s pride intact. The indebtedness position is not emphasized, and no mention is made of special accommodations. The fact of helplessness then recedes into the background, where it can reside without harming the person’s self-esteem.” Sensitivity to the feelings of the person being helped can lead to mutual understanding and cooperation.

Knowing how and when to help out completely, partially, or not at all also requires you to think on your feet. Sometimes it may seem more efficient for you to take over a task completely. At the same time, by doing so you may be ignoring the remaining abilities of someone with AD. You may reason, “I can fix a meal in half the time it takes him so I might as well do it by myself,” even though the person with AD may derive satisfaction from playing a part in meal preparation. At the other extreme, you may assume that a certain task can be done independently, causing the person with AD to struggle needlessly. You may think, “She can still manage paying those bills by herself” when, in fact, she may silently wish for relief from this stressful work. Understanding the different levels of dependence and independence requires much insight into the needs and preferences of the affected person. At the same time, you cannot overlook the limits on your own time, energy, and patience. Balancing all these practical and personal needs can be a real juggling act.
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