November Note From the President and CEO

This Holiday Season Give the Gift of Planning for a Dementia Diagnosis

by Kim Callinan
Nov 29, 2023 Kim Callinan author newsletter November 2023 newsletter

Whether you celebrate Bodhi Day, Christmas, Festivus, Hanukkah, Kwanzaa, Yule or another winter holiday, December often involves reflecting on life and gathering with loved ones. This makes it an ideal time to give the gift of peace that comes with end-of-life planning. 

I can already hear the groans, “What, you want me to talk about death during the holidays? How depressing.” 

If you think about it THAT way, it is depressing. However, it doesn’t have to be! End-of-life planning is a gift for loved ones — it replaces guilt and guesswork with clarity and closure. If you approach the conversation this way, it can be both loving and empowering. In particular, I hope this holiday season you will set aside some time to work with your families to develop a care plan should you get dementia. Here’s why:    

Dementia Is Likely to Impact You or a Loved One

Most people have or will have a personal experience with dementia — either as the person with a diagnosis, as a caregiver, as a friend and oftentimes all of the above.  

• Currently, seven million people in the United States are living with dementia 

• Almost half of older adults die with some form of dementia.  

• The number of people affected by dementia is expected to grow to a staggering 13.8 million people by 2050.  

We all hope that one of the many researchers working to find a cure for dementia will be successful. However, that is not the reality we live in now.  

Standard Medical Treatment Is Not What Most People Want

When asked what they would want if they had advanced dementia, most adults say they would prefer to be kept comfortable and avoid suffering as opposed to receiving treatments that prolong life.17 However, dementia is not treated as the terminal disease it is. The standard medical care for dementia is to continue life-prolonging treatments — often unknowingly — even in the advanced stages of dementia. Few are told they have the option to discontinue treatments for other acute and chronic conditions such as diabetes, pneumonia or kidney disease. Furthermore, people with dementia often receive aggressive, potentially burdensome and unwanted treatments that show little benefit, even in the very late stages of dementia. For example: 

• There is no evidence that artificial feeding tubes offer any benefit for a person with advanced dementia and in fact can cause harm. Yet approximately 30% of all PEG tubes (a surgically inserted feeding tube that provides nutrition directly to the stomach) are placed in people with dementia.  

• Visiting the hospital can be traumatic for people with dementia, yet 57% of nursing home residents with advanced dementia had at least one emergency department visit in their last month of life.  

Dementia Patients Have Options Few Recognize

Every adult with decision-making capacity — or their healthcare proxy — can refuse or stop treatments. However, few people know of this option. In addition, standard advance directives do not address the complex and unique issues that arise with dementia.  

Compassion & Choices Has a Newly Updated Tool That Can Help

That’s why Compassion & Choices has launched a program designed to integrate dementia directives into advance care planning. One aspect to this program is having more individuals fill out a dementia-specific advance directive. Compassion & Choices has recently updated our Dementia Values and Priorities Tool, and it is now available for your use!

This updated, free web-based interactive tool allows you to consider and document the care you want — or do not want — should you get dementia, and then produce an addendum to your existing advance directive. It takes approximately 15-30 minutes to complete. With the goal of increasing adoption within medicine, the updated tool was designed by clinicians to align with physician orders for life-sustaining treatment, or POLST, a form that medical providers are already accustomed to. In addition, we considered feedback from many of you — it is now easier to understand and complete, and has links to explanatory videos that help demystify your options.  

Give your family the gift of no guesswork this holiday season: There is no time like now when it comes to end-of-life planning. 

^{1 _{2023 Alzheimer’s Disease Facts and Figures, Alzheimer’s Association. Accessed at  https://www.alz.org/alzheimers-dementia/facts-figures.}}

^{2 _{Davis MA, Chang C, Simonton S, Bynum JPW. Trends in US Medicare Decedents’ Diagnosis of Dementia From 2004 to 2017. JAMA Health Forum. 2022;3(4):e220346. doi:10.1001/jamahealthforum.2022.0346}}

^{3 _{2023 Alzheimer’s Disease Facts and Figures, Alzheimer’s Association. Accessed at  https://www.alz.org/alzheimers-dementia/facts-figures}}

^{5 _{Medline Abstracts for “Care of Patients with Advanced Dementia.” Accessed at https://www.uptodate.com/contents/care-of-patients-with-advanced-dementia/abstract/23,66-68}}

^{6 _{Li I. Feeding Tubes in Patients with Severe Dementia. Am Fam Physician. 2002;65(8):1605-1611. Accessed at https://www.aafp.org/pubs/afp/issues/2002/0415/p1605.html#afp20020415p1605-b6.}}

^{7 _{Hunt, L. J., Ritchie, C. S., Cataldo, J. K., Patel, K., Stephens, C. E., Smith, A. K. (2018). Pain and Emergency Department Use in the Last Month of Life Among Older Adults With Dementia. Journal of Pain and Symptom Management. Published online: September 14, 2018. DOI: https://doi.org/10.1016/j.jpainsymman.2018.09.005. Accessed at .https://www.jpsmjournal.com/article/S0885-3924(18)30465-2/fulltext}}