Caregiver Insights
Understanding Dementia
What is Anosognosia?
Q. Why is it so difficult to get people with Alzheimer’s to accept help with tasks like taking showers, changing clothes and taking meds? And how do you overcome this problem?
A. Alzheimer’s caregivers are aware that the disease progressively destroys memory and cognitive skills, resulting in the loss of a person’s ability to perform even the simplest of tasks. But most people do not know that more than 80 percent of the people with Alzheimer’s also have a condition known as anosognosia. Anosognosia is a disorder caused by incurable brain damage, which results in an inability to recognize one’s own cognitive or physical deficits. As anosognosia evolves, it diminishes a person’s willingness to accept medical and other forms of assistance.
Imagine for a moment that you strongly believe that you are healthy, mentally fit, and fully capable of taking care of yourself, as you have throughout your life. Suddenly, people start telling you when to take a bath, change clothes, take your meds, and change your underwear. To you, these people are being rude and violating your privacy. How dare they!!!
The struggles between caregivers and their loved ones over this issue are legion and invariably repeated. There are no magic solutions, but a better understanding of the dynamics of the situation may help you to cope.
There is a difference between caregiving a child and caregiving an adult with dementia. Parents are responsible for meeting a child’s basic needs, providing comfort, guiding development, and ensuring proper medical care. They are expected to be hands-on decision makers whose goal is to prepare their children for healthy, productive lives.
Caregiving for adults with dementia is more complicated. The caregiver’s goal is more centered on safety, comfort, and reducing anxiety than it is on ensuring longevity. Accordingly, strengthening the relationship between you and your loved one is more important than whether a pill is consumed or a clean shirt is put on. Your most powerful competences are patience, empathy, and consistency. Forcing compliance may be counterproductive. Stay calm. Avoid arguing or insisting on the task. While people with Alzheimer’s may have difficulty recalling specific memories or events, their brains can still retain emotional impressions of past interactions, especially when it comes to trust and comfort. You want to be a positive force in their lives, not an ogre. But whenever there is a significant health issue, you should contact a professional for help. Medications may be appropriate.
People with dementia react to other people and situations based on how they feel. If a person feels discomfort or unease because of a former experience with an individual, those emotions can linger and make them more resistant to future care from that person, even if they can’t recall the incident.
Understanding anosognosia’s role in Alzheimer’s and knowing that your loved one is not intentionally being difficult can help you maintain a calm demeanor and improve your care giving strategies. Since people with dementia are most comfortable when they have established daily routines, it may be helpful to regularly administer medications right before breakfast or dinner and to take showers or baths right after getting up in the morning or going to bed at night. Incorporate caregiving tasks into the flow of established daily activities.
When you find resistance in other caregiving situations, try redirecting the person’s attention to something else, like an activity you can do together, a comforting item, or a positive memory. It is wise to always have on hand a list of their favorite topics that you can bring up when needed to divert their attention. Body language and non-verbal cues can be as important as what is said. Calm gestures, eye contact, gentle touching, and a soft voice convey safety and empathy, which can help ease their resistance. Some caregivers have found success by using calming music, familiar videos, or visual aids to distract and soothe their loved ones during personal care routines.
The most successful caregivers are those who express love and caring – and avoid being critical and demanding. One of my favorite sayings is: “Leave things better off than the way you found them.”
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