For About and By Caregivers

Subscribe to our bi-monthly publication Today's Caregiver magazine

  + Larger Font | - Smaller Font


Share This Article

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

(Page 2 of 2)

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.


  1 2

Printable Version Printable Version


Follow Us on Facebook Follow Us on Twitter Follow Us on Youtube Follow us on Pinterest Google Plus