How Dementia Presents at the End of Life

Ask A Death Doula

Big Ideas:

1. Defining Dementia and Alzheimer’s [1:35] - Dementia is a general term for a decline in mental ability severe enough to interfere with functions of daily living. Alzheimer’s disease is a mental decline that shows up first as loss of memory function and is a form of Dementia. Brain lesions, called amyloid plaques, accumulate causing a declining ability to cope as brain cells die. It is a neurodegenerative disorder. People can live an average of 7 to14 years after the initial diagnosis. Alzheimer’s disease accounts for 60 to 80 percent of dementia cases. It is the most common form of dementia among older people. Approximately 4.5 million Americans suffer from this disease, which usually begins after age 60. Alzheimer’s disease cannot be cured and is a tremendous burden on caregivers. It is 24/7 care psychologically, physically, and economically. The world population is aging rapidly and there will be more of a prevalence of chronic disease issues as a result – both cognitive and physical. The average life expectancy is currently 81 – medical and scientific advancements could soon push this well into the upper 90s or even past 100. The longer we live, the more likely it is that we will experience chronic issues. Dementia is one of the most difficult chronic conditions to deal with for families (on many fronts). As practitioners, we have to be aware of what those families have most likely been through caring for a dementia patient before we show up for the end-of-life portion of the disease process.

2. The Signs of Dementia [4:09] – There is no definitive diagnosis for Dementia. It is most commonly marked by short-term memory loss. Forgetting where you parked the car, forgetting where you put the keys, or what you ate for lunch today are little things that can indicate early onset. Long-term memory tends to stay intact. Safety is always the most important thing to consider regardless of disease process – it is especially important with dementia patients. It is vital to plan ahead so that they don’t end up in dangerous situations due to the condition – put safety measures in place. After memory, the next declines tend to occur with their emotions and inhibitions. Dementia patients can become labile – you will see a reverse presentation of how the person was in their life. For example, someone who was sweet and affectionate can become verbally abusive and combative (and vice versa). It is important to remind the family and loved ones that it’s not them, but rather the disease that is causing these behavioral changes.

3. Dementia Requires 24/7 Care [8:04] – This disease is typically psychologically, physically, and economically draining on the patient’s family and main caregiver. There is an underlying perpetual crisis with dementia. The indications that someone is experiencing their end of life take place over years with dementia – as opposed to months or weeks with many other disease processes. A rapid decline in food intake that is leading to a measurable level of weight loss is the strongest indication that a dementia patient is entering their end-of-life phase. It can be difficult to keep Hospice services for dementia patients if there is no measurable decline in their condition. Other indications that someone is in decline is if they are: sleeping most of the time, talking to people you don’t see, incontinent, not eating a lot. Before they reach the final phase of this disease, patients will get up and wander and there are safety issues non-stop – it is one of the most burdensome diseases for the caregiver. By the time they are admitted to Hospice, it is now an end-of-life scenario, and the presentation is very different. As a Doulagiver, don’t think you need to know everything about an active Dementia/Alzheimer’s disease process – by the time you get there, they will most likely be bed-bound and very weak compared to the earlier stages of the disease.

4. S.E.D. [16:30] – V.S.E.D. stands for Voluntary Stopping Eating and Drinking. Organically at the end of life, the swallowing reflex turns off – it is inevitable that one day the end-of-life patient will no longer be capable of swallowing. This is the first tell-tale sign that they are transitioning and is also a major safety issue. VSED is the conscious choice to take this measure earlier. There is a lot to this – we will have a full podcast episode dedicated to the topic and there is a resource for you below to read. You can request not being fed in your Advance Directive if for whatever reason you can no longer communicate due to dementia or another disease process or injury.

5. Tips for Caregivers of End of Life Dementia Patients [20:30] – As practitioners, we know this is a hard disease to care for – we want to be sensitive to that and show up for the caregiver. They are usually burnt out by the time we, as Doulagivers, become involved in the process. Rotate respite care for the primary caregiver so that one person doesn’t shoulder all the burden – let them be present in this last moment with their loved one. Have meals delivered to them and make sure they are eating, drinking, and getting adequate physical activity and rest. Caring for the caregiver is so crucial when dealing with dementia.

Memorable Quotes:

1. “Having an Advanced Directive is the best way to plan ahead to protect your wishes in the event of developing Dementia and/or Alzheimer’s.” – Suzanne B. O’Brien RN

2. “We have an Eldercare Crisis that is only projected to increase for decades to come. We don’t nearly have the set up to care for them. At all.” – Suzanne B. O’Brien RN

Resources: GET THE FREE Death Doula Guide HERE

VSED Resource: https://compassionandchoices.org/end-of-life-planning/learn/vsed/

AD for Dementia and Alzheimer’s – refusing food and liquids https://endoflifechoicesny.org/directives/dementia-directive/?fbclid=IwAR3KVCeUAvfGJLgglyXFvpWeIrqeo67T-ElNW5J7trujwIb8KZXK_0gbmKE

The rising prevalence of dementia is a global emergency

https://www.economist.com/leaders/2020/08/27/the-rising-prevalence-of-dementia-is-a-global-emergency?gclsrc=aw.ds&gclid=Cj0KCQiA_c-OBhDFARIsAIFg3exIlbA2gDzVYH9ugbS4QAQh6GirG4lYuZMVCXkrRucSlXOnIEdC8mQaAmkTEALw_wcB

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xoxoxo Suzanne