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Making room for connection, love and meaning

by Jacq Molloy

One of the most heartbreaking truths related to dementia is the common belief in our culture that people living with dementia are only existing.

But as study after study informs us, and as anecdotal evidence continues to remind us: the person is still who they have always been … even when that self appears to be locked up and without verbal expression. They are still there. Here. With us. Now.

Dr Steven Sabat writes in his 2019 article, ‘The Supportive Role of Spirituality in the Lives of People Diagnosed with Dementia’:

It is very important that we understand clearly that a diagnosis of dementia does not mean that a person has lost a great many important qualities that he or she possessed for decades of adult life. In other words, people diagnosed with dementia, even in the moderate to severe stages, still possess a great many quintessentially human attributes.

A partial list includes: being sensitive to the emotions and vulnerability of others, the ability to be embarrassed and humiliated, to maintain self-respect and dignity, feel love for and gratitude toward others, wish not to be burdensome to loved ones, appreciate humor, feel loneliness and despair, need to be appreciated for their virtues and forgiven for their foibles (Sabat,2018).

It is vitally important that we recognize all this and that we support those remaining abilities and attributes so that the person diagnosed is (a) treated as humanely as he or she ought to be treated, and (b) given the opportunity to express his or her strengths and important qualities of being for as long as possible, because (c) doing so will enhance the quality of life of the person diagnosed as well as that of his or her primary care partners. 

An especially important personal attribute that can remain strong in the moderate to severe stages of dementia is the ability to have spiritual experiences.

One of the simplest ways to explore our spirituality – to remind ourselves what fills us up – is through ConnecTo and the use of the five domains (connection to self; connection to others; connection to creativity; connection to nature; and connection to something bigger).

By exploring what is most important to us we learn what we need to make room for in our life to fully feel like ourselves.

When we use it with others, it helps us to pay attention and discover what could be most meaningful to the other.

In her research documented in ‘“Not just existing”: Meaning through activity participation’, Dr Laura Tierney notes that while ‘meaningful activities’ are different for each person as they are suited to the person’s unique physical and cognitive abilities as well as their interests … activities that are considered meaningful for people living with dementia in RACFs have six key features: enjoyable; suited to the person; engaging; goal-related; linked to identity; and social.

Thinking about these six features can help us to make sure that a person’s personhood and agency is kept front of mind.

Elizabeth Pringle writes in her article ‘Life is Risky’ (2021):

Human rights are universal in that all people in the world are entitled to them, and these rights are inherent to the dignity of every human. This holds for people living with dementia and their family caregivers. Their rights, however, are often overlooked or even deliberately trampled. This can have serious impacts on a person’s quality of life.

Trying to wrap older people in cottonwool is not an answer.

Dementia challenges us to continue to hold the tension around this life-limiting cognitive condition when so much of our language about dementia is negative and tragic.

But Prof John Swinton also challenges us. He asks great questions in his 2019 article, ‘Where does love go? Love, hope and dementia’:

Dementia brings with it deep and profound questions which challenge us to think differently about the nature of humanness.

What happens to our love when we have forgotten what it is that we love? Where does our love go when we can no longer remember those whom we “used to” love?

He suggests we should reflect on those questions. And if we do, what will that help us to see and understand about those living with dementia?

When we acknowledge that people living with dementia are more than ‘just existing’, how do we support them to be connected in their own life?

Our final word is again from Prof John Swinton and his 2020 article, ‘Citizenship, Personhood and dementia:

The conversation around dementia and personhood is rich, deep and ongoing. It is also significantly influenced by cultural assumptions about what it is about human beings that is important.

Dementia challenges our cultural perceptions of what it means to be a human being in quite profound ways. In hypercognitive Western societies it is very easy to judge and devalue people on the basis of loss of memory and intellectual and cognitive ability. When people lose their memory it is often assumed that they somehow lose themselves: “She is not the person she used to be”; “I prefer to remember her the way that she was”.

The problem with this way of thinking is that if someone is “not the person they used, to be,” then who exactly are they? More importantly, if they are not who they previously were, or how “we” remember them, then why would we love them?