Butterfly Approaches – helping loved ones have a ‘feelings matter most’ approach when caring for their loved one with Dementia

“It’s all about moving from your head space, you’re thinking, to come down to your heart space. It’s all about that emotional connection.” Amanda, Family Representative, Mountain View Aged Care Centre, Australia.

Dementia Care Matters

Dementia Care Matters is a leading global culture change organisation with a primary purpose to challenge cultures of care which enhance quality of life for people living with a dementia. Dementia Care Matters facilitates a model of care based in emotional intelligence which achieves a change from ‘doing’ person centred care, to ‘being’ person centred. Providing quality dementia care, and indeed all care is all about understanding ‘Feelings Matter Most’.

Feelings Matter Most

Feeling that you matter in social, disability of care environment involves just the same things as mattering in other times of our lives. Life is a journey and every moment has significance, it makes us who we are and this feeling is not limited by a diagnosis.

We achieve significant moments by:

•  Knowing our Feelings Matter Most in life – we feel

•  Ensuring our environment is one of familiarity – we look

•  Needing to be reached – we connect

•  Having a purpose and engaging in meaningful activity – we occupy

•  Valuing relationships with people – we share

•  Being loved for who we are – we reach

•  Sensing acceptance and freedom – we relax

•  Nurturing and looking after oneself – we matter

Being Loving

The magic of the Butterfly approach is to create a sense for every person living with a dementia that they are loved, they matter and they belong. A person living with a dementia, as do all of us, need to feel loved – we all rely on our friends, family and supports to feel this way.

Family & friends are central to maintaining meaning, purpose and mattering for  people living with a dementia, without the connection of community, family and friends as well as connection to the reality of lived experience, this results in levels of ill-being for people and is then labelled as ‘behaviour’.  The true essence of being loving is o make moments matter and connect with people in true and authentic relationship. This in essence is what Being Loving is about, the ability to be vulnerable enough to enter someones reality and truly BE with them.  

Kitwood, 1997 in his seminal work around personhood outlines the essential psychological needs for people living with a dementia need to be centred around:

Comfort – the feeling of trust that comes from others.

Attachment – security and finding familiarity in unusual places.

Inclusion – being involved in the lives of others.

Occupation – being involved in the processes of normal life.

Identity – what distinguishes a person from others and makes them unique.

Kitwood (1997) distinguished that these psychological needs are existing in all human beings, but are possible to be heightened for people living with a dementia because they have added vulnerability and are less likely to be able to take action to satisfy these human needs. Essentially, these five psychological needs contribute to the expression of love.

Communication

Being able to connect is the heart of communication, this is no different regardless of any lived experience of dementia. There is a need to ‘bridge the gap’ and find ways of communicating and connecting with people which are meaningful, appropriate and essentially, make that moment an experience of well-being.  Communication is an individual process, and what works with one person may not work with another. Also what works one day, may not work the next. It’s about going with the flow and being vulnerable enough to enter the reality of the person living with a dementia in that moment.

People living with dementia have lost the ability to comprehend logic and reason.  Effective communication becomes about speaking in a language of feelings rather than a language based on comprehension and reason. It is important we all learn to respond in a feelings based approach, and don’t always take words and facts literally. regardless of our own opinion or reality, we need to embrace the moment as it presents itself and ensure that there is no loss of control as this is what usually illicits an experience of ill-being.

When we adopt a feelings based communication pathway rather than a thinking and reasoning pathway  the importance of knowing the person’s life history and their emotional memories is pivotal in providing a well-being experience. Also this is helps find those meaningful and magic moments where true connection and relationship can be enhanced.

Memory boxes are a great way to collect and use of objects that have significance to the person and value emotional memories.  Moreso, there are benefits to referring to these items of significance as tactile prompts which assist in making the moment matter. Life story books are a great way to provide carers, families and support people with details of a person significant life history, however as in any true relationship, this also needs to be reciprocated.

Sense of Purpose

“If that swan stops paddling it will sink. We need to be supported to paddle harder so we can keep functioning for as long as possible.”  — Kate Swaffer. All too often there is a notion that we are providing good quality of care by relieving people of tasks and ‘doing’ it for them. We need to change our thinking and remove ‘doing’ from our mindset and replace it with being and enabling people to maintain occupation.  This creates meaningful purpose.

Having a sense of purpose, to give us that the feeling we matter is so important to all humainty. Why would this change as a result of a diagnosis of any kind? Even if a person can’t complete a whole task due to their experience of dementia – it’s about enabling a sense of purpose of meaningful occupation relevant to their life story.

Family, friends and support staff alike are supported, empowered and central to the care of the person living with a dementia, enabling a greater holistic approach to support the individual.

Author : Louise Charlton – Consultant Trainer

Dedicated to Aged Care and providing quality of life to people living with Dementia. Successfully implemented and lead a culture change to the ‘feelings matter most’ approach – the Dementia Care Matters Butterfly Model of Care.

Now working as a Consultant Trainer for Dementia Care Matters in the Australian Team. I have a strong desire to help transform the quality of life of those living with dementia.