Caring for Dementia

Dementia is a rarely understood, and complex disease, with many misconceptions about the disorder and it’s symptoms. We are going to dispel five different myths to clear the fog.

1. Dementia is JUST the absence of memory.

False.

Dementia (depending on which type) can affect various parts of the brain responsible for abilities such as: speech, problem solving and decision making etc…

“At first, Alzheimer’s disease typically destroys neurons and their connections in parts of the brain involved in memory, including the entorhinal cortex and hippocampus. It later affects areas in the cerebral cortex responsible for language, reasoning, and social behavior.”

https://www.nia.nih.gov/

While memory loss is often one of the initial symptoms we associate with dementia, it’s important to recognize that dementia progresses to impact various cognitive abilities. Understanding the emotional experience of individuals with dementia involves acknowledging the loss of once-familiar capabilities. As independence dwindles, it can lead to feelings of irritability, frustration, and, in some cases, physical aggression.

2. Only seniors get Dementia.

False.

While dementia is commonly associated with older adults, it’s important to recognize that individuals in their 20s, 30s, and 40s can also be affected, experiencing what is known as early-onset dementia. Picks disease, a specific type of frontotemporal dementia is a prominent disease that affects younger adults, most commonly ages 40-60. The causes of early-onset dementia are often diverse, ranging from brain protein abnormalities and genetic factors to trauma-induced or substance abuse-related triggers. Notably, those who develop dementia at a younger age tend to have a more accelerated progression of the disease compared to individuals diagnosed in their 70s or 80s.

If you find yourself concerned about a loved one, be observant for potential indicators of dementia. These may include significant memory lapses such as forgetting the location of their house or street, an inability to recognize familiar faces, frequent confusion, heightened irritability, or engaging in repetitive tasks and questions. Early recognition and understanding of these signs can be crucial for timely intervention and support.

3. People with Dementia can’t understand anything.

False.

Dementia varies significantly from person to person and across its different stages. There are individuals who may struggle to recall their daughter’s name, yet effortlessly sing 50 different songs from their childhood. Each person possesses unique abilities and challenges, highlighting the importance of recognizing where assistance can be beneficial.

While individuals with dementia may experience lapses in insight, they still retain the capacity to comprehend certain aspects of communication. Utilizing simple sentences or presenting clear options can enhance understanding. When discussing care-related decisions, seek input from the person, as engaging them in the decision making process grants them independence and encourages a sense of self-worth through autonomy.

4. People with Dementia should adapt to our routines.

False.

Challenges is maintaining our routine are exemplified as the stages of dementia progress. Understanding that individuals with dementia may lose the capacity to comprehend and follow instructions is pivotal. To provide effective support, it becomes necessary to customize our communication approach, select words thoughtfully, and adapt the surroundings to better suit their needs. This involves modification of our behaviours and routines, ensuring alignment with the emotional needs and cognitive abilities of those entrusted to our care. It also can encompass modifying our environment or living spaces to make them more “dementia friendly”. We must learn that with dementia, having their own simplified routine may be more beneficial than trying to assimilate them into our busy, overstimulating routines.

5. People with Dementia can’t have intimate relationships.

False.

I often encounter conflicting opinions on this matter, but I consider it a fundamental human need — the need for intimacy. It’s crucial to recognize that intimacy extends beyond sex or intercourse; individuals may lack the capacity to engage in sexual relationships, but can still consent to intimate relationships. This can involve gestures like holding hands, closeness, and sharing meals. Typically, the Power of Attorney or substitute decision maker must also consent to these relationships. Alternatively, if the person retains the capacity to consent to a sexual relationship, they should have the right to engage with another consenting adult. While opinions may differ, I firmly believe that individuals with dementia deserve love and connection. Why should they be deprived of such essential aspects of life at this stage? For more insights into healthy sexuality in dementia and engaging in intimate relationships, you can explore further below:

Unpopular Opinion: Dementia and Healthy Sexuality.

Leave a comment below to tell us other myths you’ve come across!