The stigma associated with having Alzheimer’s disease and/or any other type of dementia can create a profoundly isolating, painful experience. As a person starts to go through some of the early symptoms, such as memory loss, difficulty in completing everyday tasks, and not being able to follow conversations, that person may be reluctant to share these symptoms with family, friends, or a doctor out of fear of knowing what might come next. Part of that fear can be tied to the stigma that has accompanied Alzheimer’s disease and other dementias.

Imagine that you are in pain and struggling to determine where the pain is coming from. You can’t find the words to express yourself, so you use the only words you have, but no one seems to understand or help. Imagine being in pain for over an hour, and now someone is asking you to do something you prefer not to do. They are asking nicely, and attempting to move you, but you are hurting and do not want to be moved. You want help and relief from your pain, but the person is not helping, and you feel desperate for someone to understand. What might you do to be heard and understood? You might lash out by screaming, hitting, or biting, depending on how much you are hurting and how much the other person is forcing you to move. What might happen next? If the scenario above took place in a long-term care community, it is probable that anti-psychotic medications would be used to calm or sedate you.

As Julie Boggess remarked in her recent blog, informal caregivers and the care they provide for care recipients represents a substantial part of the long-term care support system. Caring for a loved one with dementia is challenging and can be difficult. Both stress and burnout in caregiving are all too common, as Pam Brandon’s blog notes. This is especially true during the holiday season. The extra demands that accompany this time of year make getting the regular things done more challenging, and the expectations for getting everything done can be overwhelming.