It's becoming very clear to my sister and I that Mom is exhibiting signs of dementia. Until recently, she was mentally sharp and in control of her life. After surgery and extended hospitalization 9 months ago, Mom has seemed like a different person with significant memory deficiencies and diminished cognitive skills. Mom does not seem to be aware that she is "slipping". In fact, she becomes immediately defensive and angry when the topic is broached. We are accused of "picking on her" when we bring up concerns. After several months of trying to convince her to see a neurologist, my sister and I have all but given up. According to Mom, she's "fine" and we are just overly critical. How do we get these concerns out in the open so they can be addressed?
Apparently, this lack of awareness is a very common component of Dementia and Alzheimer's Disease and it has a name, Anosognosia. Up to 81% of Alzheimer's patients are affected. Stroke patients often experience this condition, temporarily and it occurs frequently in those suffering from mental illness or traumatic brain injury. Although the cause is not known for certain, studies suggest that deterioration in the brain's frontal lobes may be the culprit. The frontal lobes are the region that play a key role in "problem solving, planning and understanding the context and meaning of experiences and social interactions" according to the New York Times' New Old Age blog. So, when this area breaks down, the left side of the brain works to keep the individual's mental model and belief system intact by using strategies such as denial and rationalization. These strategies are not employed consciously by the person with Anosognosia. He or she does not even recognize the problem.
This condition can be incredibly difficult for family members and caregivers who are trying to help someone who is ill and can not recognize it. A loved one can be having trouble with tasks that were once routine but will refuse to admit that she needs help and may refuse a medical evaluation that would diagnose the problem and potentially lead to treatment. Before you jump the gun and assume that your really difficult elderly parent has this condition; consider the following key signs.
What are the sign of Dementia with Anosognosia?
- Not keeping up with regular daily tasks or personal hygiene. My sister started noticing that our mother was not keeping up with laundry and was wearing dirty clothing. This was out of character for her and very concerning.
- Difficulty managing money and bills. This has recently become a problem with mom frequently becoming confused and irritated when reviewing her billing statements. Even normal, reoccurring charges were suddenly confusing. Rather than asking for assistance, she would allow statements to pile up on her kitchen table.
- Being less inhibited in conversation and behavior in public. Yep, mom is off the charts with this symptom. My sister reports that EVERY single time she takes mom out for lunch, she sends her meal back to the kitchen. To make matters worse, it's never done discretely. The scene is so embarrassing that my sister has stopped taking our mother out for meals. Unfortunately, shopping and lunch was something that they used to enjoy together.
- Becoming angry when confronted with forgetfulness, lack of self care or poor decision making. This is probably the most challenging symptom for caregivers to deal with. Well meaning and concerned family members often walk into a mine field when trying to confront these issues with their loved one. The anger and verbal abuse can be frustrating and at times, frightening.
- Confabulation; making up answers they believe are true though the details may be "sketchy" and may pertain to something from the past or something they read or heard elsewhere. This was not a term that I was familiar with but there are definitely times when I feel like mom substitutes manufactured stories for the truth when her memory is hazy. I have been thinking that this was intentional, maybe not.
If your loved one exhibits some of the symptoms above, it's time to discuss the matter with her primary care physician for further guidance. If a diagnosis of dementia with Anosognosia is made, what's next? For starters, it's probably best to stop trying to convince your senior parent or family member of their limitations. That is likely to be an exercise in futility. Instead, look at ways to change how you relate and communicate with him to mitigate the effects of the disease.
Strategies for helping a loved one with Anosognosia :
- Keep interactions calm and low key. Try not to put a spot light on areas where your loved one is struggling. Focus on the positive.
- Where possible, provide a structured schedule for tasks. Be subtle; don't force the issue. My sister found that leaving a calendar behind for mom with key appointments recorded as well as suggested schedule for taking care of routine tasks like laundry, linen change, and bill payments was helpful as a subtle reminder.
- Try to downsize your loved one's responsibilities while being careful not to suggest he or she is incapable. Perhaps someone else can take over or assist with paying bills, cleaning the house or coordinating home maintenance?
- Use positive approaches to communication. Try to be gentle, encouraging and empathetic when speaking with your loved one. Remember that he or she is not aware of negative behaviors and can not control them. If you are feeling impatient or frustrated, take a break. Both parties will benefit.
- Avoid putting your loved one in situations that trigger upsetting or embarrassing behavior. If you know that your parent tends to lose appropriate filters and manners in restaurants, simply avoid them and save your sanity.
For my sister and I, it helps a little knowing that Mom is not simply being "difficult" and stubborn; she is just not aware of her limitations. We try and remind each other of this fact when the going gets really tough.
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