Living well with dementia

I hear the phrase “living well with dementia” a lot. 

Mum and Dad lived at home for almost 6 years both with moderate dementia.  I’ve always said that they definitely lived well with their dementia; they were content at home, they were surrounded by loving family and friends, and it was arguably their happiest years of marriage.

The bigger picture behind the statement “living well with dementia” was driven by passionate individuals wanting to improve the quality of life for people living with dementia and their carers.  They aimed to reduce stigma and discrimination, promote positive self-identity and empowerment, and support people to live independently and well.  All of which are very important in providing dignity and respect to people living with dementia. 

Recently I’ve been reading some interesting discussions on this topic from both people living with dementia and their carers.  For some, the words “living well” are seen to be unrealistic and unhelpful; instead, they embrace the phrase “not living well with dementia”.  The view is that in actual fact this is the reality for most people living with dementia and their families, and expecting people to “live well” is too idealistic, fundamentally beginning with most health systems failing to provide adequate support. 

This discussion also maintains that the words “living well” imply we should lead a healthy lifestyle, which includes connecting with people, managing mental health, engaging in stimulating activities, having purpose, feeling loved, and the list goes on.  If this is the case, then most of us probably don’t “live well” all the time, even with full brain capacity.  Wouldn’t it be unfair to then expect someone living with dementia to “live well” too?

Looking at mum and dad’s world of dementia I would say their reality was a roller coaster ride of both “living well” and “not living well”.  

I believe their key to “living well” was being surrounded by loving friends and family who endeavoured to embrace their world of dementia. We accepted their realities and confabulations, walked in their shoes, found their ‘happy place’, didn’t remind them that they had dementia, and we tried to avoid adding confusion and stress. 

Despite our best efforts, their world was often very stressful; they lacked short-term memories, were no longer being able to do activities they loved, struggled to live independently, and at times were aware there was something wrong with them.  They both would become quite anxious and as a result, the mental health of all those around them was affected.  I was a very stressed and overwhelmed carer most of the time.   

The health system gave them small packages of “living well with dementia”; mum attended a weekly Day Programme, 2 lovely Home Support carers visited twice daily and we had support from the local Alzheimer’s Society.  Little did I realise that ten years ago they were well supported in comparison to our current health system.  Which I think sadly sets up most people living with dementia and their families to “not live well”.  

For some people the words “living well with dementia” can truly be unhelpful.  Stigma and discrimination still exist, there is limited support, education and understanding, and loss and grief are experienced by many.  Amidst such a reality, “living well” could be viewed as unattainable and furthest from their truth. 

We could say that this discussion is just individuals’ interpretation of the words “living well with dementia”.   For some, absolutely. 

But I would argue that if we truly walk alongside people living with dementia and give them person-centred support and care with dignity and respect, then “living well with dementia” exists. 

Let’s not forget that we all need compassionate support and understanding, dignity and respect to “live well”.