Caregiver Translation of Dementia & Disease
The rise in caregiver needs is more important now than ever before with the challenges caregivers face in our "new normal" around the world. Part of these needs is simply better information. In the United States alone the numbers of caregivers have risen by over 10% since 2015 from 43 million caregivers to 53 million in 2020 pre-COVID. This demographic includes younger caregivers than ever before between the ages of 18 -34.
I asked Judy Cornish to come back on the show with me so we can go further into Dementia, the stages, and why it is not a disease. Caregivers often ask 'How' to care for their loved ones before we even consider 'What' we are caring for and 'Why' they need the care when it comes to Dementia. When we consider Dementia as a disease then we begin to separate the healthy from unhealthily mentally which promotes the loss of compassion. We focus on their behaviors before we focus on the individual. Although it is important to understand the behaviors common with the progression of Dementia, it is just as important to not lose sight of your loved one as a person and not a diseased individual.
Judy Cornish is an author and founder of the Dementia & Alzheimer’s Wellbeing Network (DAWN®), creator of the DAWN Method®, and retired elder law attorney. Her two books (The Dementia Handbook and Dementia With Dignity) take person-centered Dementia care from theory to practice by identifying the skills not lost to Dementia. Through DAWN, Judy provides counseling, private classes, and an online video program for families and home caregivers. Her goal is to help families learn how to truly support their loved ones and enjoy more companionship as they live with Dementia.
Another way to reduce stress as a caregiver is understanding the type of Dementia your loved one is living with which means beginning the diagnosis process as soon as possible. Then as you understand the type you are closer to understanding which skills they have lost and which skills they still have. Between the loss of rational thinking skills or the retention of intuitive thinking skills, it places both our loved ones with caregivers in a position to find common, safe grounds to live within.
Before we get further into types of Dementia know that Dementia overall is split into two groups based on which part of the brain is affected. Those two groups are Cortical and Subcortical Dementias. Cortical Dementias stem from problems in the Cerebral cortex, which is the outer layer of the brain. People living with these types of Dementias are afflicted with Alzheimer's and Creutzfeldt-Jakob Disease. They usually have severe memory loss causing issues with remembering words or understanding language.
Subcortical Dementias stem from problems in the parts of the brain beneath the cortex. People living with these types of Dementias experience Vascular, Parkinson's, and Huntington's. They most likely show changes in their speed of thinking and ability to start activities. They are not initially suffering from memory or forgetfulness and language problems. To confuse us even more it is possible to have both areas of the brain affected similarly to Huntington's Disease.
With Alzheimer's, our loved ones are experiencing the loss of memory because the brain's nerve cells break down with early signs being missed. This is because we all begin to forget names or facts over time as we fill our brains with more knowledge over our lifetime so deciphering a momentary senior moment from the early stages of Alzheimer's takes awareness and education to spot the differences. Long-term memories usually remain intact while short-term memories become sketchy or forgotten. Meaning daily conversations are lost which prompts repetitive questions. You might que into these changes if they are also experiencing poor hygiene and lack of interest in normal daily self-care habits.
With Vascular Dementia our loved ones are experiencing impaired coordination or balance walking as strokes take place cutting off the supply of blood carrying oxygen to the brain. While Alzheimer's progresses slowly, Vascular related Dementia is noticeable earlier on because our loved ones have problems with short-term memory, begin wandering or getting lost in familiar surroundings, and have trouble concentrating, planning, or following through on activities. They also begin to have trouble managing money, laughing or crying at inappropriate times, and experience loss of bladder or bowel control sooner than later.
Vascular Dementia occurs over time as "silent" strokes occur more often and becomes noticeable when the symptoms create more of a significant disability. Aside from mini-strokes, Vascular Dementia is typically a result of diabetes, high blood pressure, smoking, and high cholesterol. Although Vascular Dementia is not reversible it can be treated by managing the root causes to slow the progression if diagnosed early.
With Frontotemporal Dementia our loved ones are experiencing changes in their personality, become socially inappropriate, or impulsive or emotionally indifferent. Some also experience the loss of the ability to use language properly. This type of Dementia is often misdiagnosed as a psychiatric problem or as Alzheimer's. The major difference being FTD tends to occur at a younger age than Alzheimer's does between the ages of 40 and 65. Vascular Dementia typically progresses toward FTD as the brain suffers from a lack of oxygen which contributes to brain atrophy and shrinkage more aggressively than Alzheimer's.
The most common signs of FTD appear in clusters as our loved one becomes increasingly inappropriate in social settings, loses of empathy and interpersonal skills towards others, exhibit lack of judgment, become more apathetic which is mistaken as depression, and begin to exhibit repetitive compulsive behaviors like tapping, clapping, smacking their lips, or pilling (rubbing fingertips in a circular motion). Personal hygiene is neglected as their eating habits change usually with overeating or predominantly preferring sweets and carbs.
Dementia with Lewy Bodies is typically diagnosed as Parkinson's Disease first with a year or two later becoming more pronounced as Lewy bodies. It is also misdiagnosed as Alzheimer's because of the decline in cognitive abilities. Those diagnosed with Lewy bodies experience hallucinations, problems with attention or alertness, difficulties with walking or movement, and sleep disorders or REM sleep behavior disorder. This is when they physically act out their dreams. Since there is no cure medications are prescribed to treat specific behaviors but Lewy bodies patients often have severe sensitivity to medications for hallucinations.
The middle stages of dementia last the longest from anywhere between 2 to 20 years. FTD is typically not linked to family history. All forms of Dementia vary from person to person regardless of genetics because findings are linked more so to the environment or lifestyle-related habits than to family history. This is why it is so important to understand all these differences so we can refocus on the individual in a more compassionate way instead of solely on their behaviors as if they are separate from the individual.
Living well with Dementia is possible when we keep the following in mind:
1) People diagnosed with Dementia are not completely helpless. Live one day at a time and cope with things as they occur.
2) Involve the person with the diagnosis as much as possible in future plans for their care. Plan as many things in advance so the family can support their loved one's wishes.
3) Set up their environment for success. Create a safe boundary around them to limit fall risks, provide helpful reminders with dates and times, and encourage them to help you with little tasks.
4) Use memory tools. Create To-do lists or alarms for reminders for important dates like birthdays, doctor appointments, or medicine to maintain memory or awareness.
5) Emphasize remaining strengths. Your loved ones living with the middle stages of Dementia can still continue to learn skills or incorporate muscle memory-type tasks.
6) Engage other senses. When we lose one sense the others seem to compensate. Listening to the music of specific time periods or cooking favorite recipes can help to not only allow a moment for your loved one to engage but also stimulate the neurological connections still intact.
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Thank you for joining in and listening with us today. You can find more about this topic on the blog at www.jessicalizelcannon.com. I hope this gave you more food for thought and until next time, BE PROACTIVE. Take care, everybody.
Intro: Vacation Time by Khris Paradise
Outro: Misty by Khris Paradise