Alzheimer’s disease and related forms of dementia involve a progressive loss of one’s memory, thinking, language, and self-care skills. Someone with dementia eventually loses the capacity to be completely independent, and others must step up to provide assistance. A special brand of leadership is called for. At least one person must assume overall authority for ensuring the person’s well-being. Much work is involved in addressing basic physical needs like food and shelter as well as the emotional, social, and spiritual needs. You need not be afraid of taking on this important leadership role, although it may feel awkward at first. Quite simply, the person with dementia needs your help. If possible, it is best to share this role with someone else willing to help and support your efforts.
Whether the person with dementia 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 impaired person needs protection from the risks imposed by the brain disease. Unfortunately, this person no longer enjoys intellectual equality and control over decision-making diminishes. Your role in the relationship must change in corresponding ways.
Anyone who assumes responsibility in a relationship is exercising more power than the other person. This does not mean, however, that the dignity of the person with dementia should be diminished or ignored. On the contrary, preserving one’s dignity becomes the utmost priority. In taking leadership, your job is not to dominate the other person’s life, but to help minimize one’s disabilities and maximize one’s remaining abilities. Ultimately, the leadership role is about meeting the needs of the other person in a profoundly intimate way.
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 one’s remaining abilities. You may reason, “I can do something in half the time it takes her so I might as well do it by myself,” even though the person with dementia may derive satisfaction from performing the same task. At the other extreme, you may assume that a certain task can be done independently, causing the person with dementia to struggle needlessly. You may think, “She can still get dressed by herself” when, in fact, she may silently wish for help with this stressful task. Understanding the different levels of dependence and independence requires insight into the other person’s needs and preferences.
A good metaphor for the changing relationship between you and the person with dementia is the relationship between two dance partners. When a couple dances, the roles of leader and follower are 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 dementia, you may be called on to change roles from follower to leader.
It may take a long time for you to learn a new set of “dances moves,” even though you may know that a different way of relating is now required. The sooner the shift in roles takes place, however, the better it will be for the person with dementia. If you are assertive without being domineering, helpful without being overbearing, and kind without being patronizing, then the person with dementia is likely to respond well to your good intentions. Be patient with yourself as you learn how to be a gentle leader.
The above is excerpted and adapted from Alzheimer’s Early Stages: First Steps for Families, Friends and Caregivers by Daniel Kuhn, Hunter House Publishers, 2003.
Daniel Kuhn, LCSW is Community Educator for Rainbow Hospice and Palliative Care, based in Park Ridge.