The "I" in Dementia

I am quite sure the ‘I’ in dementia stands for isolation. I hear about (and have experienced) isolation from caregivers, family members, and even individuals with dementia themselves. Dementia is isolating. Just think of it from the perspective of not being able to remember or recall, not having the same abilities as before, not knowing if the words coming out of your mouth make sense or even convey what you intend for them to say. You are isolated from knowing why these changes are happening, how to control them, and what your future will be like. You are on the Isle of Dementia and there is no way to be rescued.

People treat those with dementia differently. There is a stigma surrounding dementia. It is unknown what causes it, why it occurs, and there is no cure. People with dementia and those caring for them change and are not the same. Dementia’s not catching, but anyone could ‘get’ it. There are very few friends, colleagues, even family members that will continue to communicate, visit, ask you out to lunch, etc. if you are unfortunate enough to have dementia. There is much avoidance when there’s a lack of understanding. People may not know what to say for fear of uttering something that might seem ill-intentioned, hurtful, or unsympathetic. Others do not know (or worse, do not want to know) what the individual with dementia or the caregiver are going through. They may shy away from interaction and ‘not know how’ to treat the one with dementia. Even doctors isolate patients with dementia and their caregivers by not knowing enough about dementia or caregiving to be helpful. Hospice patients do not see a physician and have information conveyed secondhand through a nurse or nurse practitioner. In the case of my father, the hospice doctor avoided treating his back pain or treated it with dangerous drugs for his condition. They isolated dad from an improved quality of life due to their own lack of knowledge and expertise about dementia.

Caregiving is isolating, too. Caregivers cannot always go out and do what they want to do or need to do. They feel obligated to stay in proximity, especially when pleadingly asked, “Where are you going?” or “When are you coming back?” Caregivers might not have anyone to talk to because they do not have caregiving experiences that are common to others. They may be erroneously perceived as complaining, venting, or looking on the dark side of the situation. Family caregivers may isolate themselves, thinking no one will understand or that privacy is paramount at this difficult, vulnerable time for their loved one. Even siblings, offspring, and friends may not know how to help. They may not want to talk about it. Relatives may only infrequently call or visit. Are they embarrassed? Afraid? Grieving? Who knows why? Caregivers frequently feel others do not know what they are feeling or what they are going through. They feel alone.

That is why maintaining social contacts and support groups are so beneficial to caregivers and their beloved with dementia. No one should be so isolated as to think “I am the only one who….” Even in the case of dementia, it takes a village. And the magic ‘I’ that can help change this isolation into something more productive, more beneficial, more human, is interaction. Even when it seems impossible. Just take the time and do it. Call, visit, text, ask. It can make all the difference to someone's world.