Today I want to address the issue of the caregiving of individuals with dementia (e.g. Alzheimer’s disease, Vascular dementia). I have been working with caregivers and their families for many years and I’ve observed that there are a number of common events that should be better understood. This post is Part I of a series of posts that will be forthcoming about caregiving.
It’s been my experience that it takes about 2 years for a person to learn how to be an effective caregiver of someone with a dementia. Why so long? I want to discuss two aspects of the answer to this question: assumptions about what’s normal and comparisons to childhood.
It takes time to understand the nature of this kind of illness so that one can distinguish between behavior that in the past appeared intentional from behavior that is most likely determined by a neurological disease that is progressive. Part of growing up in any culture involves developing a set of expectations for how an adult is supposed to act. We take for granted that our spouse, parent, brother or sister, etc., has the capacity to reason, understand speech, draw logical conclusions, focus their attention, and remember what has been said or observed. Of course, there are variations in all this depending on the situation, the personalities involved, the nature of the relationship, etc. But, these expectations are revealed in sharp relief when the person stops acting in conventional ways. For example, repetitive questions occurring over a short time, not recognizing familiar people or places, being unable to perform simple tasks in a sequence (e.g. getting dressed), saying things in public that are both out of character for the person and inappropriate to the situation.
People diagnosed with a dementia are not children. The similarities are that as the disease progresses, the person becomes more dependent. Also, the ways we have to assist that person, especially with simple tasks- are reminiscent of childrearing. But, a person with dementia is an adult disabled cognitively. What’s the difference? If you’ve reared children or been around them, you know that they learn exponentially, and children strive to be independent. That is a very different context from which to understand someone’s behavior (e.g. when you’re helping a 3 year old to get dressed you’re not thinking of how tragic it is that he/she has lost that ability). It’s the difference between witnessing a slow, grinding destruction of hard won skills and autonomy instead of the often exciting race to grow up and be independent.
As will become evident in future posts, caregiving for a disabled adult requires new skills, a different sensitivity, and a deep compassion- similar to parenting- but ultimately very different. The patient will die – that is for certain. With love and safety and some luck, the child will grow up.
Thank you for reading this post.
If you find that my perspective on caregiving makes sense to you, and you are considering psychotherapy, send me an email or give me a call and we can schedule an appointment.
Contact Houston Psychologist Dr. Robert Reichlin 281-813-7202 Drreichlin@robertreichlinphd.com
