"Life is Uncertain, Eat Dessert First" -Ernestine Ulmer

Let's talk about food, eating, and Dementia. A person's eating habits will change as their Dementia symptoms change. In the early stages, those living with Dementia may be able to prepare, consume, and enjoy their meals as they always had. But, they may not be able to recall the foods they ate with which meal on a given day.

Middle stages of Dementia present different challenges. As symptoms progress and memory worsens, it may become difficult for the person to recall if or when they ate at all. Meals are skipped or repeated. Navigating the kitchen with all of its appliances, tools, cabinets, and drawers becomes nearly impossible. Failing memory may lead to eating utensils left on the table, unused.

At this stage, the sense of smell may become impaired, altering taste and food preferences. Favorite foods become intolerable while an uncharacteristic interest in sweet or salty foods takes their place. Complicating the process, fine motor coordination involved in chewing and swallowing may deteriorate. Behavioral changes like hoarding and hiding food as well as eating non-food items such as soap can also develop in mid-stage Dementia.

Over time, meals may become nothing more than cereal and milk. It remains important to encourage healthy eating habits, both for adequate nutrition and to maintain regularity. Still, recognize and respond to your loved one's food choices- prepare small amounts of their favorite snack foods, made available in a way that respects their independence. 

Later stages of Dementia may leave a person unable to recognize food nor know what to do with it. The person in your care may lose the ability to synchronize chewing, moving food to the back of the mouth, and then swallowing. Pocketing is a related difficulty that occurs when food accumulates between the teeth and cheek.

Many methods used to help people with swallowing problems require an ability to follow and remember directions. Often the only solution is for you or other caregivers to hand-feed small amounts of soft or liquefied foods. Be sure to seek advice regarding the types of foods that work best, as well as receive instructions for safe hand-feeding methods and what to do if your loved one does gag and choke.

For caregivers, how to address feeding problems may be the first of many end-of-life decisions. The immediate goals are to provide enough calories to prevent weight loss and malnutrition and to devise ways to prevent the aspiration of food into the lungs. 

Some doctors believe tube feeding is the best way to address this stage of decline. However, research shows that using feeding tubes in patients with late-stage Dementia neither prevents complications nor improves quality-of-life. 1

Respect for and the preservation of your loved one's dignity figure into these decisions. While thin lines separate methods to- maintain the quality of life, to save life, and to prolong life -it is for each family of caregivers, hopefully guided by a living will, to determine the appropriate path at the end of life.

1.    Li, I, MD. "Feeding Tubes in Patients with Severe Dementia," American Family Physician http://www.aafp.org/afp/2002/0415/p1605.html, (accessed September 21, 2016).
  
Content Contributor: Janet Yagoda Shagam, PhD, is a freelance medical and science writer and the author of "An Unintended Journey: A Caregiver's Guide to Dementia." Available through Amazon. (Modified by K. Ogden, team member Dementia Society of America)
The opinions expressed by contributing authors are not necessarily the opinions of the Dementia Society, Inc. We do not endorse nor guarantee products, comments, suggestions, links, or other forms of content contained within blog posts that have been provided to us with permission, or otherwise. Dementia Society does not provide medical advice. Please consult your doctor. www.DementiaSociety.org

Wishes and End of Life Conversations

Many people find talking about their end-of-life wishes extremely uncomfortable. Yet, when asked, nearly everyone has strong convictions about their end-of-life care. Some might say, “Do everything possible to prolong or save my life." Others might say the same, so long as they have a "good quality of life." Your loved ones want what's best for you, but they cannot read your mind. Such difficult decisions require your guidance.

Meaningful end-of-life choices require both introspection and research. For some, religion is their guide - for others, their decisions come from life experiences. Making decisions about treatments such as tube feeding and cardio resuscitation require that you learn why and when doctors may opt to use or not use these procedures.

Palliative and hospice care is another facet of your end-of-life care. Another word for palliative care is comfort care. Patients continue to receive standard treatments for their conditions. However, as the disease progresses, patients receive increasing amounts of comfort care. An example of comfort care is using medication to relieve pain rather than treating the source of pain surgically.

Hospice, an extension of palliative care, provides patients and their families care and support from a team of healthcare providers and counselors. Volunteers may give families time they need to attend to their personal needs and other matters. Palliative and hospice care are not, as many believe, "pull the plug." Rather, it indicates the recognition that a patient will not be cured of their condition, that it will ultimately cause their death.

There are several ways to get the information you need to write realistic and meaningful end-of-life wishes. The Conversation Project is an initiative by a non-profit organization that provides tools for individuals to self-evaluate their end-of-life wishes.  Downloadable guides provide helpful suggestions to prepare and initiate conversations with family members. 1

The advance directive, or a living will, is a set of instructions that details the types of medical and life-sustaining measures you may want. This document includes the instruction to "keep me clean, comfortable, and free of pain or discomfort so that my dignity is maintained, even if this care hastens my death." This last phrase gives permission to family members and clinicians to evaluate your wishes in the context of humane care. For example, it would be inhumane to give last-ditch cardio-resuscitation to a person who has severe osteoporosis as the procedure would crush the patient’s ribcage.

Your advance directive is a legally-binding document that requires your signature and the signature of at least one other witness or a certified notary depending on where you live. Advance directive forms are available from your healthcare provider, local agency on aging, or your state health department.

Five Wishes is a product of the non-profit organization, Aging With Dignity.2 They designed an advanced directive template that also addresses personal, emotional, and spiritual issues in addition to meeting medical and legal criteria. 

Your family members must know where to find your end-of-life care documents. To make it as easy as possible, do not put your documents in a bank safety deposit box. Also, give a copy to your doctor so that he or she can include it in your medical records file.

And yes, you may amend your end-of-life documents.

Notes:

1. The Institute for Healthcare Improvement, http://www.ihi.org/Engage/Initiatives/ConversationProject/Pages/default.aspx (accessed, September 11, 2020)

2.  Aging with Dignity, https://www.agingwithdignity.org/five-wishes (accessed September 11, 2020)

For Further Reading: Frontline: Facing Death,

 http://www.pbs.org/wgbh/pages/frontline/facing-death/educational-module/decisions-near-end-life/ (accessed Sept, 11, 2020)

Contributor: Janet Yagoda Shagam, PhD, is a freelance medical and science writer and the author of “An Unintended Journey: A Caregiver's Guide to Dementia.” Available through Amazon.

The opinions expressed by contributing authors are not necessarily the opinions of the Dementia Society, Inc. We do not endorse or guarantee products, comments, suggestions, links, or other forms of content within blog posts provided to us with permission or otherwise. Dementia Society does not provide medical advice. Please consult your doctor. www.DementiaSociety.org