Why Physicians and Families Don't Want to Talk About Dementia

About Juliet Holt Klinger

Senior Director of Dementia Care

Juliet is a passionate advocate for people living with dementia and their families. She is deeply committed to improving the cultural acceptance of those with cognitive differences. As our gerontologist and Senior Director of Dementia Care, Juliet develops person-centered care and programming for Brookdale’s dementia care communities. But if you ask her, Juliet says she continues to learn every day from the true experts, those living with dementia and their care partners. Juliet believes we need to move beyond the concept of caregiving, which implies a one-sided relationship, and embrace the idea of care partnering. Care partnering is about relationships built on cooperation—a two-way street promoting person-centered care and mutual feelings of purpose, where the person living with dementia also plays a strong role in shaping their care and daily routine. We are here to partner, learn and grow with our residents and families to make aging a better experience. After volunteering in nursing homes in high school, Juliet knew she wanted to work with older adults. While working on her bachelor’s degree in social work at the University of Iowa, she completed an Aging Studies Certificate program, before there were formal gerontology programs available. At Iowa, Juliet also had the chance to study with pioneers in the field of dementia care, an opportunity that shaped her passion for caring for those living with dementia. Trained as a gerontologist, with a master’s degree from the University of Northern Colorado, Juliet joined Brookdale in 2004. She is a seasoned senior living executive with more than 30 years of experience designing and executing innovative Alzheimer's and dementia care programs and living environments in both assisted living and skilled settings.

Does talking about dementia make you uncomfortable? If so, you would not be alone. Not only do many families avoid talking about this disease, to a large degree doctors do too—55 percent of Alzheimer’s patients and their caregivers say their doctors never told them they have the disorder.

Physicians dodge the conversation for a number of reasons: diagnostic uncertainty, fear of causing emotional distress, time constraints and a feeling that nothing can be done anyway. But I suspect the biggest reason is the stigma around dementia. (Three-quarters of people with dementia and nearly two-thirds of caregivers believe there is a stigma around living with dementia.)

Whatever the reason for this woeful disclosure rate, burying one’s head in the sand is never an effective strategy. The outlook for people living with dementia is much better when it is caught early and when caregivers and physicians deal with the disease head on and involve the person with the diagnosis in planning for their own care. This allows people living with dementia to prepare health and legal directives and to voice their wishes over their future living situation while they are still able to contribute.. One family I know went so far as to take their mother on tours of dementia care communities so she could choose where to live when she needs more support.

Enlist the Best Support Team Possible

If you have noticed possible signs of dementia in your loved one, I encourage you to set up a dementia assessment for them. If the disease is found to be present, ask the doctor to talk to your loved one about their condition. If he or she is reluctant to do so, it might be time to find a new primary care physician —keep in mind that a geriatrician is generally the best choice for any older adult, certainly those living with dementia. Also insist on a referral to a neurologist specializing in dementia (check with your local Alzheimer’s Association chapter for list of neurologists who focus on this area). These specialists can make referrals for neuro-psychological testing (done by a neuropsychologist) to identify your loved one’s sub-type of dementia. While memory loss is a common symptom of the various types of dementia, each diagnosis has its own set of symptoms, so understanding and anticipating them can make a major difference in how you partner with the person living with dementia to provide care.

Being diagnosed with dementia can be a life-changing upheaval for individuals and families. It’s crucial to work with doctors who understand the complexities of the disease, know how to communicate well, and can offer empathy and respect as the dementia progresses.

In addition to advocating for the best care possible, I encourage you to learn all you can about dementia and do your part to bring it out of the shadows. Although we still don’t have a cure for this disease, the journey is easier when families and those diagnosed are knowledgeable about the disease and are able to speak to their needs with their healthcare providers.