Dr. Ladislav Volicer, MD PhD, Courtesy full professor at the School of Aging Studies, University of South Florida, and visiting professor at the Third Medical Faculty, Charles University, talks with Virtual Hospice about programs that are inclusive of people who have advanced Dementia and create a welcoming environment. Transcripts parts were taken by interview provided to the Canadian Virtual Hospice, and was released by Creative Commons license.
What palliative care is trying to do is promote quality of life. Quality of life can be maintained to some degree, even in people with advanced dementia.
There are three main areas which need to be addressed. The first area is meaningful activity which needs to be provided for people with dementia.
The second area is medical problems which need to be treated, but only to an extent which in which they are consistent with the goals of care. So, it’s good to eliminate some of the aggressive interventions which pose more burden for the patients and benefit.
The third area is psychiatric symptoms, or behavioral symptoms of dementia, which could also lead to discomfort and need to be treated appropriately as well.
I think it’s important to provide meaningful activities because people with dementia they cannot initiate activities. They cannot continue doing their hobbies because of the apraxia, because of the cognitive impairment. So we need to provide activities for them which are appropriate for the stage of dementia. There are different activities for different stages of dementia.
In the advanced stage of dementia they might not be able to participate in activities like bingo and other activities in which people without cognitive impairment, or with mild dementia, might be able to do.
What was actually established as very nice program is called “Namaste Care”. That’s a program which is eliminating isolation of people with advanced dementia – usually in nursing homes where people with advanced dementia are either isolated in their rooms, or they are sitting in a corridor in front of the nursing station to be observed, or they might be sitting on the periphery of the activity, but in which they cannot participate. The Namaste Care is providing a specific room in which the people with advanced dementia are together. It’s a comfortable environment with some quiet music, with a lavender scent, and in presence with others who might provide massage, massage of the hands, or of the feet, washing the feet and so on. Basically some interventions which are comfortable for people with advanced dementia.
Namaste, Namaste Care, is an Indian term which means “I honour the spirit within you”. The idea is that the spirit is present even in people with advanced dementia, and it needs honoring by providing a special environment for them, by providing presence of others, and the aforementioned interventions and others. Which show them that they are still honored and they are still valuable.
The families are in a very difficult situation because they face ongoing losses. Sometimes progression of dementia was called “ongoing funeral”, and they are basically bereaved throughout the course of the disease. For instance, one of the most difficult situations is when they decide that they have to put the individual with dementia to an institution. Sometimes they feel that that’s much more difficult than when the person eventually dies. So, it is important to tell the patients’ families that the person with dementia can still feel, can still benefit from their visits. For instance, again, if you have a program like the Namaste Care which is a comfortable environment, the families will be more likely to visit, especially if you tell them what can they do with the person: they can massage their hands, they can brush their hair and things like that.
When the family goes to visit a person with dementia they should always introduce themselves, because they cannot rely on the memory of the person with dementia to recognize them. But they should realize that even if a person with dementia doesn’t recognize them, that doesn’t mean that the person does not benefit from their presence.
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