Cross-posting Dementia

We have had an excellent thread on the Changing Aging site about some of the real challenges seen with dementia.

Here is the original thread of comments:

Here is my response (posted there this morning):

The comments continue with very challenging real life concerns. So I’ll use my Friday space to address the two latest questions in the “Broken Bones and Broken Hearts” thread.

The first relates to a relative who has broken vertebrae due to osteoporosis and presumably is at risk for falls, who is now distressed by the “lap strap” that is used to prevent her standing on her own. There are no doubt many factors at play here. But number one is–the lap strap has to go. Let me explain:

The lap strap is a restraint and it hampers her ability to move or feel free, thus increasing her level of distress. It will ultimately make her weaker, through immobilization and atrophy and more likely to fall when she does stand. It will also increase discomfort and stiffness, and elevate the risk of other problems (leg edema, constipation, pressure sores, etc).

Try this exercise: Put yourself in the lap strap for one hour. Not 45 minutes, not 55. No fudging. Gotta go to the bathroom? Sorry. Can’t quite reach that pad and pencil across the table? Too bad. The chair you though was comfy starts to be very unyielding when you can’t shift your weight. Your butt becomes uncomfortable and your knees stiffen. Then imagine you are confused and when your caregiver walks out of sight, how trapped you might feel. Now imagine wearing it for hours on end.

Restraints don’t work, but they are necessitated when care partners become overwhelmed by the challenge and cannot find another safe solution. Unfortunately, the next step is usually to medicate the distress caused by the restraint. It’s like hitting someone on the head repeatedly and giving them Tylenol for the pain.

The reality is that if a care environment is stressed to the point that restraints and sedation are the best options, then it may well be an indication that this is no longer the best care for the individual. Because of their fear of nursing homes (not totally unfounded, I might add), people cling to home-based care to the point where it becomes a more detrimental situation. When a person needs to be restrained at home (if this is the case here), then a good-quality nursing home is a better situation for all concerned.

The second writer expresses the very common feelings of (1) grief at the loss of communion with a loved one whose cognition has changed, and (2) fear that the same might happen to him. He shares the very common feeling that he would rather be “put to sleep” than experience the illness. Many people do just that–commit suicide when they learn of their dementia.

Without trying to sugar-coat this very challenging illness, I would like to offer that much of the grief we feel is a result of the stigma, negative imagery and excess disability that has resulted from a system of care that fears Alzheimer’s so greatly that all we see in our approach to care is disease, deficits and death. This leads to overmedication, disempowerment, isolation and institutionalized life (which can occur in ANY living environment). By moving from a fear-based approach (that biases our views of the person’s capability for well-being and active engagement) to more of the approach espoused in my book, by the Real Care movement and others (such as Jane Verity’s Spark of Life approach), people have experienced unexpected moments of joy and connection, and we have reignited the spirits of people who were thought to be long-lost to the illness.

Sorry folks, but there is no cure on the horizon. Rather than despair, however, this should be a call to find the very real ways that we can totally re-make the experience of Alzheimer’s for those who live with the illness and their care partners.

Please write back if any of this needs further explanation. It is a difficult and complex topic.

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