Recently I was at an event where a guest with Frontal Temporal Dementia was present. This is a brilliant man who has had the disease for over four years and is now left with a rapidly progressing, debilitating disease. The guests knew he had dementia although not necessarily the type. As is often the case, most people when thinking of dementia, were expecting Alzheimer’s Disease and seeing someone similarly afflicted. Many of the people were actually relieved to see how well he is functioning. This conclusion was based on the fact that he knew their names and was very sociable. The fact that he is incapable of speaking even the briefest of sentences or expressing himself verbally was not factored into their assessment. Frontal Temporal Dementia presents differently from Alzheimers. The person doesn’t become withdrawn. They lose all inhibitions – it does, after all, affect the temporal lobe – are unable to find words, and lose their muscle strength.
This is just one of the many isolating experiences caretakers for people with dementia, any kind of dementia, face: the gap between their reality and other people’s perspectives.
Friends who have relatives with dementia have described how after encountering friends or neighbors on the street, people will remark that the person with dementia seems to ‘be not that bad’. They base that on the fact that the person has been able to nod at appropriate times or cover for their lack of understanding in other ways. The caretaker however, knows that person can no longer watch or comprehend a television program and is incontinent, a very different perspective. It’s often these disconnects in reality that make the caretaker feel isolated. They are seeing the ravages of dementia up close while the fleeting glance can appear very different to those who are ill-informed or see a glimpse of it. Whatever the kind of dementia, it’s an isolating experience living with someone who has dementia.
A friend of mine who has a sister with early onset Alzheimer’s pointed out another aspect of dementia: unlike other debilitating and fatal diseases, those with dementia cannot express their wishes which creates a conflict-causing vacuum. I have seen this up close and it is a difficult situation. A person gets dementia and, even if he/she has clearly planned and expressed his/her wishes, family members and friends ‘know’ what the person would want. (If they haven not planned for the future, the situation is worse.) She hears, “I know she would want…” all the time, whether the person actually has some insight or not. Although every one may be well-meaning, the assumed desires of the patient may put the family members in conflict over the care of their relative. In my friend’s case, she has the power of attorney but needs to consider the desires of her young adult nephews and, in this case, her sister’s interfering ex-husband. In cases where adult siblings do not agree on the care and wishes of their parent, disagreements can fray relationships and leave the disabled parent without the care and services they need while the children argue about it. There are so many sensitive decisions to be made: taking away the driver’s license, insuring the person’s safety, getting an aide, deciding on the right living situation, getting the finances in order. These decisions all require a united family or at least one that is in agreement on important issues.
Advanced planning and expressing one’s desires about care are so important but often an avoided conversation. Caring for a person with dementia is stressful enough. A facilitated conversation might ease the way for moving ahead and getting the person with dementia the needed care. It is best to fill that vacuum with consensus.