Social inclusion is a vital need and is often thwarted by ageist exclusion or by people assuming those with dementia do not need any assistance, by forgetting, or by simply not caring. Add dementia to being older and exclusion occurs frequently. If we are included we tend to flourish. We belong, are part of the flow of life, feel connected and alive. If we are excluded we tend to shrivel up isolated even in a crowded room.
When we are younger, able to converse and contribute to social engagement, inclusion is easily sustained often to the point that we don’t even notice it. We just take for granted that we are part of things. However, when we get older and have trouble sustaining conversation or have word loss or memory loss that robs us of the thread of conversation, inclusion is difficult to sustain. We can easily drop into silent watching and then disengagement. We sit silent and are somewhere else inside. Or we just settle into mental neutral. Nothing happening.
Exclusion like this is toxic for our brains. If we mentally freewheel in neutral often enough our brains get the message that its OK to stop working. Inactivity sends a message to our brains that there is no need for it to keep functioning so it stops. Use it or lose it.
Studies of brains at autopsy of people diagnosed with Alzheimer’s dementia have shown that even though their behaviour showed signs of memory loss, and cognitive problems, a good proportion of them did not have sufficient plaques and tangles to justify a diagnosis of Alzheimer’s disease. They had minimised their lives to include little social engagement or physical and intellectual activity. Other study participants whose lives were rich socially and intellectually showed few signs of dementia in their lives even though their brains showed significant AD pathology. What do we make of this? Some dementia appears to be due to chronic inactivity that starts in late middle age as the first signs of aging occur rather than due to brain pathology. Conversely, if we have rich lives with social engagement, inclusion and intellectual stimulation well into old age and do not signal to our brains that it is time to turn off, this appears to have a protective effect on brain function as we age. We have a good chance of maintaining our lives well into the time that any AD pathology is present.
So for people with a diagnosis of dementia, maintain as much brain activity and normal functioning as possible. This means including them in everyday activities as a matter of course. If possible try to avoid adjusting your expectations down to suit their level of activity. Stretch them with some challenge that they can succeed at with effort and scaffolding support. You are the Sherpa helping, guiding and supporting where they need it to scale the mountain.