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2023 MAR Family Caregivers Blog

Family Caregivers' Blog is available to share helpful information to support families caring for those with dementia.

Should You Disclose Dementia to Others?

Mr. S, Ms. M's husband, has early-stage dementia. While he experiences some forgetfulness, he manages daily life well and particularly enjoys hiking and walking. This is likely a significant part of Mr. S's Quality of Life (QOL). While some people around Mr. S are aware of his dementia, his hiking buddies are not. Mr. S seems uncertain about whether to inform them.

Considering that his forgetfulness may worsen and he may need more assistance, Mr. S is contemplating whether it's best to be upfront about his condition. Ultimately, the decision is his to make. What's crucial is that Mr. S is striving to live alongside his dementia. He's weighing whether everyone should know or whether it's best to keep it private. He's likely considering whether disclosing his condition to those around him would help him maintain his QOL while enjoying hiking.

There is much to learn from Mr. S's attitude of living harmoniously with dementia and striving to maintain his QOL. Let’s continue to support him and see what decisions he makes.

Misinterpreting the Five Senses?

Ms. A's mother's dementia has progressed to the point where she sometimes perceives wall-stains as bugs. In society, we call this phenomenon "hallucinations." We all have moments where we mistake wall stains or other objects for bugs, which can feel like a misunderstanding. As dementia advances, the five senses can also become distorted.

For instance, wind brushing against trees or leaves may be interpreted as human voices. Reflective light on a black table might appear as if it were painted white. Additionally, the sensation of heat might not be felt as intensely, even in warm weather. Rather than panicking and labeling these experiences as hallucinations, it's often better to calmly acknowledge them as misinterpretations of the senses.

Unless these sensory misinterpretations significantly disrupt daily life, it's crucial to interact with dementia patients without fixating on them. However, if such misinterpretations begin to affect daily activities, causing decreased appetite, restlessness, or sleep disturbances, it's wise to consult a family doctor for guidance.

Moving Story

Ms. E's mother has dementia and experiences mood swings compounded by visual impairment. While Ms. E has been providing home assistance and day program support, she's now considering moving her mother to a care facility. They've started visiting care homes for exploration.

It's often advised to minimize moves for seniors, regardless of dementia status, as adjusting to a new environment can be physically and mentally taxing, especially with age. Ideally, receiving support in a familiar environment and moving to a care facility only when necessary is recommended.

Ms. E diligently cares for her mother according to her needs. Particularly for those with visual impairment or dementia, adapting to a new environment can be challenging, so reducing the frequency of moves requires careful planning and consideration.

Let's support Ms. E as she searches for the proper care home for her mother.

Should You Disclose Dementia to Others? Part 2

In our previous post, we discussed Mr. S's dilemma about informing his hiking buddies about his dementia. After a four-hour hike, during their usual tea, wine, and lunch gathering, Mr. S smoothly disclosed his condition. According to Ms. M, Mr. S mentioned, "My brain is one-eighth gone." Ms. M found this amusing, as no doctor had ever said anything like that. The support group participants also found it amusing!

However, Mr. S seemed relieved that his hiking buddies knew, and Ms. M mentioned that it seemed to come naturally. Their reactions were nonchalant, with no significant response. Perhaps this marks a step forward in Mr. S's journey of living with dementia. He plans to use an Apple Watch during walks, ensuring his family can find him if he gets lost. Such innovations will enable him to continue enjoying solitary walks for years. It's an adventure that coexists with dementia.

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