Not long ago I finished a book on the power of micro communities - The Courage to Go Forward . It posed the question of how do we support populations of individuals in ways that achieve what is most important to each person. The book uses stories to demonstrate how small, passionate tight knit groups come together to fill gaps society simply cannot (or will not) fill on its own with its broad brush approach. This reminded me of my work in disaster preparedness; and my advice to build self sufficiency, because you may be on your own for a while when first responders are overwhelmed.
I actually finished the book upon arriving to aid someone with dementia. Over the last few weeks I find myself trying to pull together a micro community to support this person; after I leave and return to my own family.
For those who find themselves in a similar role, or who want to support this population, I've prepared a few insights from my lessons learned. They will help promote dignity and respect when the stress and frustrations of being a caregiver are overwhelming.
1. Build an engaged micro community of supporters for both the person with dementia and primary caregivers. Both will need a respite from each other periodically. These can include friends, community volunteers and paid caregivers. Let each individual know what is needed and assign roles. For example, a neighbor may be ideal for taking an individual for brief walks in the neighborhood or "visiting" to allow the caregiver to run quick errands. A therapist can address functional limitations that impact activities of daily living and friends/family can show up to prepare meals.
2. Working with this population means understanding the need to respond appropriately, guide and re-direct the person with dementia. Arguing over fine details, making fun of and belittling the person with dementia do nothing to advance goals and activities of daily living. A person with dementia may really have no memory of how to find their bedroom, use their washing machine, where they keep their dishes/pajamas/xxx or that they have a son-in-law.
3. Build physical and memory strength by encouraging the individual to perform simple tasks, such as, emptying the dishwasher, folding clothes, setting the table, etc. This provides some exercise to individuals who are likely losing weight, sleeping often, and without memory, stop pursuing their interests. A person with dementia may also begin to retreat inside of themselves as they find following and participating in conversations difficult. Combined, this all increases the risk of depression.
4. Simplify, organize and clear away clutter and items that are no longer relevant to the individual; such as clothes that no longer fit, is worn or unlikely to be used again. Replace clothing with comfortable mix and match items to make self-dressing easier. Too much "stuff" can be confusing and overwhelming for the person with dementia. Now is the time to embrace a more minimalist environment.
The ultimate goal is to reduce stress and improve the quality of life for the person with dementia and their primary caregivers. The contributions of a micro community can truly lessen isolation and transform lives to make aging in place, for a longer period of time, possibile. The four items above are just starting points for the micro community as it envisions the possibilities and sets its goals to work with populations impacted by dementia.
Where would you like to start, and for whom?
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