While most people immediately go to memory loss as a primary deficit of dementia, there are other issues which can create havoc for coping be it by the affected person or support persons. Chief among those other issues are anosognosia, confabulation and disinhibition.
Anosognosia is the condition of the person lacking awareness of their own deficit. This is quite different from denial. Denial is seen as a psychological defense mechanism to distance oneself from the emotional challenge of accepting one’s issues. In denial, the person does have an awareness of the deficit, but hasn’t come to accept it. Anosognosia is truly the absence of awareness of the issue or deficit. When applied to the issue of memory loss, the person in denial will likely become angry or agitated when confronted by others about losing an object. The person may even become agitated or angry with him or herself. As for the person with anosognosia if confronted on the issue of memory loss, this person may be apt to not even understand the problem as originating with themselves, but may more believe someone is playing a mean trick on them. Whereas counseling can help a person in denial address the emotional impact of their situation, counseling for the person with anosognosia will likely prove futile. In lieu of counseling the person with anosognosia, counseling is better directed to those who support the person.
Confabulation may be best understood as the mind filling in the gaps for not perceiving things as they really are. With confabulation a person may be seen as accusatory, blaming others on the basis of misunderstandings or simply making things up in order to make sense of their distorted view of personal experiences. For instance, a person may blame their partner of having an affair when they try to put together broken elements of their perception, knowing the other is out, not knowing where and perhaps catching a piece of a message about a meeting. While the story of an affair seems to make sense to the affected person, it strays far from the reality of the situation where the other person may have simply been out shopping with a friend. Confabulation is often combined with anosognosia. Not realizing what one may miss, one constructs a distorted view that only makes sense to that person. Arguing and counseling are typically not of value to the affected person, but again, counseling can be of particular value to those who support the affected person.
Disinhibition is when the brakes fail to control our normal impulses. While everyone has had the experience of wanting to do or say something that may be deemed inappropriate, we typically have a set of internal controls that keep us from doing so. The disinhibited person has a faulty set of those internal controls and as such may say or do things inappropriate to the situation. These persons appear to lack social judgment and their behavior or comments may be inappropriately humorous to rude to hurtful to harmful to dangerous.
Taken together, anosognosia, confabulation and disinhibition can create havoc in the life of the person with dementia and those who provide for their support or care. Counseling the affected person about these issues will have little to no impact and may actually create more turmoil and upset for everyone. Rather than counseling the affected person, it is the support or caring persons, very often the family members and friends who require counseling and education. Education is best directed to explaining these conditions and offering strategies for management. Those strategies include learning when not to argue and how to redirect to more socially acceptable conversation and behavior. These can be challenging strategies to learn and role play may be helpful with instruction.
In the end, most family and friends are upset not only for the management challenges but also for the compromised dignity of the affected person. Family and friends may feel shame or embarrassment for the affected person or themselves. It is important to address those feeling as well as learning effective management strategies so that the dignity of the affected person may be better protected by loved ones and friends. To that end, loved ones and friend may have to confront their own denial and challenges in accepting the affected person’s dementia. Protecting one’s dignity begins by acknowledging the dementia so that problems arising are not seen as a reflection of the affected person, but can be viewed compassionately as an outcome of a disease process.
Counseling and education for loved ones and friends are often the best way to help the person with dementia.
Gary Direnfeld is a social worker. Courts in Ontario, Canada, consider him an expert in social work, marital and family therapy, child development, parent-child relations and custody and access matters. Gary is the host of the TV reality show, Newlywed, Nearly Dead, parenting columnist for the Hamilton Spectator and author of Marriage Rescue: Overcoming the ten deadly sins in failing relationships. Gary maintains a private practice in Dundas Ontario, providing a range of services for people in distress. He speaks at conferences and workshops throughout North America and was the first social worker to sit on the Ontario Board for Collaborative Family Law.