In the past few weeks I have covered several issues regarding depression. It is clear that being demented does not necessarily cause one to be depressed. Furthermore, being diagnosed with dementia or being placed in a care facility does not necessarily lead to depression. Depression is common but not inevitable outcome for all of us as we age. Medications work in less than half of those who are depressed and are clearly not a panacea. Finally, treating depression requires getting moving despite a lack of motivation.
What about depression in those who care for someone who is demented? Caregiving does not itself cause depression. Many caregivers have never had to deal with these feelings before and are too busy giving care to attend to their own needs and feelings. Statistics provide a wide range of estimates (20 to 60%) suggesting that depression is a common but not inevitable consequence of caregiving. Of course, there is also the issue of how depression is defined and diagnosed that is well beyond the scope of this article.
Let’s agree that we will define “depression” in caregivers as a constellation of feelings rather than a clinical diagnosis. Caring for someone with a dementia is associated with a number of possible feelings including: sadness, anxiety, worry, irritation, impatience, fear, anger, irritation, loneliness, grief, and guilt. Caregiving isolates the caregiver from others and calls for sacrifice of needs and desires. Additionally, being a caregiver is not the outcome we ever expect as a spouse, sibling, or child of someone who we love and care about.
Caregiving for someone with a progressive dementia is a very complex stressor. For Alzheimer’s disease, caregiving averages nearly a decade and may extend out two decades. The onset of Alzheimer’s and many other neurological diseases are subtle and, in the earliest stages, are difficult to tell from the changes of aging (mostly a slowing and loss of efficiency). Progression provides a moving target requiring periodic adjustments both in skills needed to mange deficits (ranges from managing the checkbook to helping with personal care) and feelings that one has in reaction to the changes. Caregivers must manage changes that do not unfold in a linear manner and differ from one person to the next.
In short, caregiving requires difficult and progressive role changes. Parents and children become parents for their spouses or for their parents. The efforts of caregivers are not appreciated – and may even be resented – by those receiving the care. Caregivers may have to confront issues for which they have no training: child-like behavior from an adult, profound forgetfulness, aggression, sexuality, and disinhibition. It’s a wonder that so many cope so well and figure out what to do.