Dementia is an incurable disease that requires a palliative approach: quality-of-life care. That’s what Marinette’s geriatrician Martjee Klapwick, says in her dissertation Quality to Death. Quality of life and quality of death in nursing home residents with dementia.
There are currently about 300,000 people living with dementia in the Netherlands, 80,000 of whom live in nursing homes. Klapwijk: “Most people with dementia end up in a nursing home when the disease progresses, because they require complex 24 hour care. This is not possible for many informal caregivers. The number of people with dementia is expected to increase in the coming years, This is partly due to increased life expectancy.It is estimated that, by 2040, there will be half a million people with dementia in the Netherlands.Klapwick studied how the quality of life for this growing group of patients could be improved.
“Dementia is still regularly seen as a chronic disease, while significantly reducing life expectancy,” Klapwijk says. She also notes that family members of people with dementia often don’t know what to expect if the patient moves to a nursing home. “If another family member has lived in a nursing home for ten years, they often expect that now.”
According to Klapwijk, caregivers sometimes have difficulty estimating the life expectancy of people with dementia, especially if the person still appears very fit. In a nursing home, Klapwijk uses the so-called surprise question: “Would it surprise you if this patient died within 12 months?” Many health care providers answer “yes” to this, while the risk of death in people with dementia is much higher than in others. I know from experience that these people often suddenly become infected or have to deal with the complications of falls.
According to Klapwijk, it’s easier to make choices that target quality of life if you know that someone’s life expectancy is limited. “We also see that patients with dementia die more comfortably if caregivers and caregivers know that dementia is a progressive, herniated disease.”
quality of life
It is relatively difficult to determine the quality of life in people with dementia, because they are often less able to express themselves. This is done in Klapwijk research on the basis of the monitoring tool, where you can answer questions about a specific resident. For example, you look at interaction with others, facial expressions, behavior, and sounds. In this way, you are also trying to determine to what extent someone is in pain.
Once caregivers anticipate a patient’s death in the short term, they can use the ‘death phase care pathway’: a tool to improve the quality of death. The pathway of care has four criteria that can indicate that a patient is dying: 1) the patient is no longer getting out of bed; 2) Subcomatose. 3) Unable to take sips. 4) He is no longer able to take tablets. Three of these criteria, in addition to the patient having dementia, often apply to people who have had dementia for some time. My research shows that this makes it difficult for caregivers to determine when the dying phase will come. This is why it would be good to have a modified version of the care pathway for people with dementia.
According to Klapwijk, at this last stage of life, caregivers in the Netherlands usually no longer extend life in advanced dementia, unlike in many other countries. We are often conservative in treatment: patients no longer receive parenteral nutrition or tubes and no longer go to the hospital. In our view, it is usually important for people to die well: they do not suffer from pain, do not suffer from shortness of breath, and their loved ones can say goodbye in peace.
The Doctoral Ceremony for Marty Klapwick will be held on Thursday, January 20th at 10 am and due to Corona measures it can only be held via Live broadcast from Leiden University to follow.
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