If there’s one thing I’ve heard the most from family members of dementia patients it would be the words … “Now what?”
Dementia is a terrifying disease that slowly robs us of the people we love. Dementia makes it difficult for the sufferer to make their wishes known, and often isn’t caught until the ability to make rational decisions has already begun to erode.
So what happens? A good primary doctor will refer to a neurologist or gerontologist. They will do further tests, determine as best as they can the type of dementia. They will prescribe medications that will help with some of the symptoms and behaviors.
If the dementia patient is lucky, they will have a caring family to step up and help manage care (or do the caregiving themselves). If resources are available, they will be able to afford for someone to come in to help or assisted living care.
Sometimes the diagnosis is given to the one suffering from memory loss … which they can’t remember, or rationally think through what needs to happen next.
There are so many issues to work through. Managing basic needs (food, water, shelter), emotional and psychological support, money and resource management, the list goes on and on.
I would love to see that a new specialty that newly diagnosed dementia patients are referred to immediately. This would be more of a social worker type of a position. They would help the patient get their support system in place. They would know about local resources. They would engage family members of the patient in conversation about how to help care for their loved one. If there was no family available or willing to take part, they would help get a guardianship established.
The goal would be to try to make sure that the dementia patient would have the support they need to live out their lives in safety. They would be able to have dignity and support during what are often very frustrating and confusing times. This would also help the families with the burning now what question.