The Challenges of Caregiving

I recently interviewed a patient with moderately advanced Alzheimer’s disease who had been brought to my office by his wife, who was in the waiting room. “Who is it that brought you in to see me today?” I asked him. “Oh, that is an old friend” he responded. “Really, how long have you known her?” I asked. “Oh, for a very long time… we grew up together; she is a really good gal.” “What is her name?” I asked. “Janet” was his correct reply. “She seems very nice” I observed, “why didn’t you ever marry her?” I inquired. “I don’t know, just never really got around to it I guess.” Later, speaking with Janet, I learned that her husband frequently did not recognize her has his wife, something she found very frustrating and disappointing after over 50 years of marriage. To make matters even worse, he often asked Janet about “his wife” – wondering where she was and why she hadn’t been coming to see him. Confronting him with her true identity was to no avail, though thankfully there were periods during which he recognized her has his lifelong partner, providing all too brief periods of respite in which they could share the closeness that only the passage of so many years together can bring.

Caring for a loved one with dementia is a challenging task that seems to present ever-higher obstacles as the dementia progresses. Typically, the early challenges involve merely dealing with frustrating forgetfulness and difficulty keeping up with day-to-day activities. However, eventually functional declines begin to emerge such as difficulty handling more complex tasks, such as planning a dinner or managing the checkbook. Eventually, difficulties emerge in performing even simpler everyday activities such as shaving, picking out clothes to wear, dressing independently, bathing, and even toileting. These declines frequently leave the caregiver feeling as though they are again caring for a child; indeed, dementia can be seen as a slow progressive spiral back towards the dependency of infancy.

In addition to functional declines, and perhaps more frightening and difficult to deal with for the caregiver, are changes in the perception of reality that accompanies dementia. Talk to any caregiver, and you will hear countless stories of their loved one accusing them of all types of things, including stealing, infidelity, abandonment, plotting against them, and even of trying to poison them. The will tell stories of their loved one wanting to “go home” when they already at home, of seeing and hearing things that are not there, of accusing them of being an imposter, and of engaging in activities that make no sense and have no purpose. I remember one exasperated daughter who complained that her mother was constantly hiding her possessions around the house out of fear that someone would steal them, only to then angrily accuse her daughter of having stolen them when she was later unable to find them!

Changes in the perception of reality are typically accompanied by other behaviors with potentially serious consequences. These include agitation, verbal threats, and sometimes-physical outbursts and aggression in response to their perceived offenses. I have had patients that have made numerous complaints to law enforcement officials about perceived wrongdoings against them, and other that have actually filed lawsuits based on their delusional beliefs. Another common problem is wandering – frequently a result of the individual attempting to get to a place that, unfortunately, no longer exists, or due to sleep disturbance that has them sleeping during the day and then up wandering at night (referred to as diurnal rhythm disturbance).

In spite of all of the challenges involved, many family members tell me that they would not trade the experience of seeing their family member through the stages of dementia for anything, for intermixed in the periods of turmoil are periods of closeness, bonding, and reflection that would not have been experienced any other way. Clearly, both the level of independent functioning and quality of life are maximized and prolonged for the patient suffering from dementia that is able to be cared for in a loving and supportive home environment. Fortunately, it is rare for any one individual to exhibit all of the problems that can accompany a dementing illness, and a well-prepared caregiver with adequate resources can often find the knowledge and guidance needed to handle problems as they arise. In coming issues, we will address some of the more common challenges facing the caregiver, including handling behavioral problems, improving communication, preventing wandering, diffusing aggression, managing sleep problems, the issues involved in bringing in outside help, and, perhaps most importantly, caring for the caregiver.