Coping with Dementia: Let’s Not Scare our Care Partners
Providing care for a loved one living with dementia is one of the most exhausting care partner tasks there is, because the disease is progressive and ultimately requires attention 24/7.
To drive this message home, speakers about Alzheimer’s and dementia – including acknowledged experts – often assert that 70 percent of family care providers will die before their loved one with dementia!
I cannot count the times I have heard this claim, in both lectures and casual conversation among people who are trained in this field. It is an apocryphal story that has become deeply woven into the folklore of dementia, but it is simply not true!
Surely, when the experts report this grim but erroneous statistic, they intend to encourage care partners to be more mindful to take care of themselves; to care for their own health as much as that of their loved one. But I fear the result may be the opposite. To tell a group of care partners that 70 percent of them will die before their person with dementia likely only demoralizes them and fills them with even more despair about the grim road ahead, thus pushing their stress levels even higher.
A 2018 study reported by the National Institute of Health concluded, “Although a handful of studies have examined mortality among caregivers of persons with Alzheimer’s disease or a related dementia, the proportion of caregivers who die before their cognitively impaired care recipients remains unknown.”
Caregivers for Alzheimer’s and Dementia Loved Ones are NOT likely to Die Before their Partner
In these previous studies, the database was either too small or the conditions to uncontrolled to make the results reliable, and none supported the 70 percent claim for caregiver mortality that is so casually thrown around in conversation.
To the contrary, the 2018 NIH study, which is rigorous and based on 17 years of data, found that 18 percent of care partners die before the loved one they are caring for. This means that more than 80 percent of care partners survive their loved one with dementia, which is quite the opposite from the belief that 70 percent of caregivers die first! The referenced study can be found at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6292823/.
So, I appeal to all in the medical industry and care community to stop telling care partners that they are 70 percent more likely to die first and leave their loved one with dementia behind and alone. Their task is stressful enough, and they don’t need to be frightened with unfounded warnings of impending doom.
We want to encourage care partners to seek and welcome help, such as the advice and companionship one can find in a support group. Positive motivation is always better than trying to frighten someone into taking action.
About Debbie Selsavage
Debbie Selsavage is a Certified Trainer and Consultant in the Positive Approach to Care and a Certified Dementia Practitioner. She authors a monthly column to assist caregivers in coping with Dementia. Her company, Coping with Dementia LLC is dedicated to making life better for individuals living with dementia. Contact Debbie at [email protected].