Reasons Why Coping with Alzheimer's Is So Challenging

Coping with Challenges of Alzheimer's. Cultura/Uwe Umstaetter Cultura Exclusive/ Getty Images

Every situation or disease has its unique challenges, including Alzheimer's disease. While there's no "right" answer to the question of, "What are those challenges for Alzheimer's?", here's an attempt to identify a few of the most pressing ones after more than 20 years of knowing and loving many people with dementia.

One more thing before I begin. Identifying these issues and challenges is a way to acknowledge and share some of the challenges you may be facing.

It's not meant to minimize the feelings of privilege and honor I know many of us have about being able to care for a loved one who is living with dementia.

With that said, here are my top six:

1) The person might not look any different, yet she is different.

Unlike other conditions where it's clear to the casual observer that the person is battling a cancer or is physically ill, Alzheimer's disease and other kinds of dementia are quite invisible upon first glance. That's not necessarily a bad thing, but it does mean that you may need to provide an explanation at times to those around her if she's having a hard day.

2) The loss of shared memories and the presence of confusion may cause grief for both the person with the disease and his family.

Alzheimer's disease can be difficult, both to experience and to watch. It's that feeling of sand slipping through your fingers at the beach, except there's no refilling your hands with another scoop of warm sand.

3) Sometimes, the core personality of the person changes with the disease.

This is often more difficult to cope with than the memory loss. Some days, it can be very difficult to find your loved one as the disease hides her. Other days, she's right there.  

4) Behaviors and emotions in Alzheimer's disease can be difficult.

Although you know it's due to the disease and not the person, the behavioral and psychological symptoms in dementia (BPSD) can be difficult to not take personally.

Responding in a way that's helpful and not patronizing can also be a challenge at times.

5) Alzheimer's care can be expensive.

Because Alzheimer's requires increased supervision at minimum and direct care as the disease progresses, the costs of Alzheimer's can add up quickly.

6) For some, acknowledging that you or a loved one has Alzheimer's carries a stigma.

Many are unsure of how to react to the news that someone has Alzheimer's disease. They may make assumptions about the person and not visit her anymore, thinking that she's "gone crazy" or "wouldn't remember me anyway."

Additionally, there continues to be a lack of knowledge in the general public about Alzheimer's disease and related dementias. While much has been done to combat this and increase public awareness, much remains to be done.

Additional Resources

Source:

Alzheimer's Disease International. World Alzheimer Report 2012. Overcoming the stigma of dementia. 2012. http://www.alz.org/documents_custom/world_report_2012_final.pdf

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