Compassion & Choices is working to transform how people die with dementia to ensure people are aware, empowered and supported in getting the care they want – or do not want – should dementia take hold.
Why does Compassion & Choices focus on dying with dementia?
Can Dementia Be Cured?
There is no cure for dementia.5 However, research has shown that there are ways to delay the onset or progression of dementia. By making adjustments to their daily routine, people can help improve and maintain a healthy brain. These changes include eating a healthy diet, remaining active and moving more, and socializing with friends and family. Check out US Against Alzheimer’s Brain Guide for more tips.
Why Are So Many More People Dying with and From Dementia?
A hundred years ago, people died from influenza, pneumonia, strokes and diarrhea. Diseases that no longer make the top 10 leading causes of death.6 As we have discovered cures for these and many other diseases, life expectancy has increased, and more people are dying with and from dementia.
In short, through medicine, we can prolong the body but not the mind. Furthermore, instead of treating dementia like the terminal illness that it is, medical advances are extending the length of time a person lives with advanced dementia. Consider these facts from three different studies:
- In the last month of life, 57% of nursing home residents with advanced dementia had at least one emergency department visit. Of those, close to half were admitted to the hospital.7
- In their last three months of life, 41% of people with dementia underwent at least one burdensome intervention, such as hospitalization, emergency room visit or tube feeding.8
- 42% of dementia patients in nursing homes were on antibiotic therapy during the last two weeks of their lives.9
Such tests and treatments may place people with advanced dementia in situations that go against the best evidenced-based practices in dementia care, such as keeping a person in a familiar environment, establishing routines and ensuring circadian rhythms are maintained.10
What Does it Mean to Have Advanced Dementia?
During the advanced stages of dementia, most people endure the irreversible loss of mental and bodily function in which they:
- Cannot recognize loved ones
- Cannot recognize surroundings
- Cannot speak or make oneself understood
- Experience personality changes
- Cannot respond to the environment, speak or control movement
However, it’s important to remember that dementia is a progressive disorder. So people can live many meaningful and enjoyable years after the onset of dementia.
Do I have any Legal Options to Avoid Living With Dementia?
Absolutely. Every mentally capable adult has the right to document their desire to decline medical treatments. In the early stages of dementia, patients may also choose to voluntarily stop eating and drinking (VSED). To learn more, go to the Compassion & Choices' Dementia Values & Priorities Tool and other resources.
Medical aid in dying is a strictly defined and regulated act in the jurisdictions where it is authorized. Only mentally capable adults with a terminal diagnosis of six months or less may self-ingest properly prescribed medication in those jurisdictions. No one may assist nor coerce this action. Compassion & Choices does not support the expansion of medical aid in dying for people with dementia.
A primary safeguard in medical aid in dying policies is that the person must be mentally competent and able to make the request of their medical provider and take the medication themselves. Given the inequities that exist in our healthcare system, the extension of medical aid in dying could put vulnerable populations at risk. Decades ago, people died from dehydration, diabetes and disease, not dementia. We believe that everyone has the right to choose to die a natural death rather than be subjected to medical interventions that may artificially extend life. People can take control, even in the face of dementia.
Tools and Resources
- Don’t Worry, Be Ready: A Tour of Compassion & Choices Tools
- The Dementia Values & Priorities Tool allows people to create a set of clear-cut care instructions for their loved ones and outline their intentions through a personalized care plan — a Dementia Healthcare Directive.
- The Dementia Provision is a PDF version of the tool for those who are not computer savvy; however, the tool will automatically generate a customized advance directive, so if possible, we’d recommend using the tool.
- The Dementia Decoder empowers people to specify what they want to accomplish from an upcoming clinical appointment and customize that experience using a list of helpful questions.
Information About Dementia
Webinars and Opeds
- Living With Advanced Dementia, by Kim Callinan
- 1 in 2 older adults now die with a dementia diagnosis, by Kim Callinan
- Living and Dying With Dementia: Taking Charge of Your Personal Values (Hosted by the American Society on Aging)