Alzheimer's: Stepping Into The Leadership Role

By Daniel Kuhn, LCSW, MSW


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.
A good metaphor for the changing relationship between you and the person with AD is the relationship between two ballroom dancers. When a couple dances, the roles of leader and follower are carefully orchestrated. A good leader dances in a way that enables the follower to be led almost effortlessly. The leader’s cues may be so subtle that the follower may not appear to be led at all. The couple dances together gracefully as each partner cooperates in playing his or her part. In your relationship with a person with AD, you may be called on to change roles from follower to leader.

Another thing about your relationship is that you can no longer take for granted that the person with AD will remember the proper steps. You must now take a more active role in the dance. You must learn when to step in and when to step back. Fluctuations in symptoms will often make it hard for you to gauge when to step in to offer help and when to step back and refrain from helping. In a newspaper article, Jean Baron describes this problem in relation to her husband with AD: “Perhaps hardest is the contradiction between his need for independence and his need for help with some things. This leads him to accuse me, on the one hand, of treating him like a child and, on the other of not being sensitive to his needs.”

It may take a long time—months or even years—for you to learn a new set of “mental gymnastics,” even though you may know that a different way of relating is now required. The transition to your new leadership role can evolve over time. In its early stages, the disease does not require that you assume a full-time position as a caregiver. On a practical and emotional level, it is important to keep in mind the limits of your leadership role at this stage. One man shared his thoughts with me about his limited but central role during the early stage of his wife’s disease: “I purposely don’t think of myself as a ‘caregiver,’ as the word implies a total dependence on her part. This may be a matter of semantics, but I try to differentiate between what she needs for me to do for her and what she can do for herself. So far, the latter far outweighs the former. When that switch takes place, I guess I will have become a caregiver.”

Fortunately, since AD progresses very slowly, in most cases you can make the shift in your role as leader bit by bit. The sooner the shift in roles takes place, however, the better it will be for the person with AD. If you are assertive without being domineering, helpful without being overbearing, and kind without being patronizing, then the person with the disease is likely to respond positively to your good intentions.
Daniel Kuhn is the director of education at the Mather Institute on Aging, the research and education division of Mather LifeWays, a provider of senior living communities and services based in Evanston, Illinois. He is currently directing a three-year, federally funded project to enable family caregivers to better manage their own self-care. Through this project, 120 professionals will learn to teach an innovative educational program called Powerful Tools for Caregivers to over 2,300 family caregivers in northeastern Illinois. He has authored or co-authored more than 30 publications on the impact of Alzheimer’s disease on individuals and families, including his guidebook, Alzheimer’s Early Stages: First steps for family, friends & caregivers, now in its second edition. Kuhn is a frequent presenter at regional and national conferences.


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