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Enhancing the Well-Being of People Living with Dementia

I recently attended a Dementia Beyond Drugs masterclass facilitated by Dr Allen G Power. It was inspiring to hear an ex-GP and Geriatrician talk passionately about a person-directed approach to caring for people experiencing cognitive decline. This is in contrast to the medico-management approach which is currently favoured in care facilities, where medical intervention and top-down staff management tend to over-ride the needs of individual residents.

Dr Power started the workshop by asking each of us to imagine “If a time should come when you can’t speak for yourself, what are three important things that you would want others to know about you?” You might want to take a minute to note these down and share them later.

Dr Power advocates for a paradigm shift away from seeing dementia as an incurable disease to addressing the well-being of the person and improving their quality of life. He suggests we address behavioural problems by finding out what the underlying needs of the person and addressing those needs rather than just medicating. This is a whole-person approach to aged care as advocated by the Eden Alternative.

Power has identified seven domains of well-being (Eden Domains of Wellbeing®) that form the basis of quality of life for elders and in fact they apply to us all. These are Identity, Connectedness, Security, Autonomy, Meaning, Growth and Joy. He has shaped these domains into a pyramid, similar to that of Maslow’s hierarchy of needs.

Fig 1. The well-being pyramid illustrates the hierarchy of needs that, if met, restore well-being (from Dementia Beyond Disease – Enhancing Well-Being by G. Allen Power).

As Power says, “Well-being is a need that transcends all ages, abilities and cultures. What if most of the hard-to-decipher distress we see in the elderly is actually related to the erosion of one or more aspects of the person’s well-being? People with dementia become distressed for largely the same reasons you and I do! The difference is they may be less able to verbalise their feelings and needs or remember the information that helps them feel secure and in control.”

An example that may resonate with the reader is when a person needing care resists showering. This may because the person doesn’t want to be showered by a stranger where trust hasn’t been built effectively by the caregiver. It’s quite natural that a person might resist being undressed and washed by someone they don’t know. This may be especially difficult for someone living with dementia who has lost their ability to communicate effectively. Just think, a person who needs personal care in a private home or rest home may be showered by dozens of different caregivers (often strangers) over the course of a year. How many of us would like that?

From the perspective that difficult behaviour usually signals an unmet need, Dr Power suggests that caregivers and health care assistants get to know the personal preferences and likes and dislikes of their residents or clients so they can improve each person’s well-being. As all of us want to know we have autonomy or self-direction over our lives, regardless of our age or infirmity.

According to Power, transformational models of care work on three levels – structural, operational and personal. On a structural level, organisations that are following this paradigm shift (mostly in the US and Australia) commit to a philosophy of improving well-being for all their residents. This requires a positive view of ageing, valuing elders and valuing the importance of relationships. It also involves finding new ways to communicate with residents to facilitate their autonomy and sense of belonging. Operationally, staff are trained in this person-directred approach and learn how to relate to residents and clients in a way that addresses their needs for identity, connectedness, security, autonomy, meaning, growth and joy.

According to research, such a transformational Person-directed Model of Care not only improves well-being for elders, it significantly reduces the frequency of chest infections and pressure injuries in residents. It also reduces formal complaints from families, and decreases staff turnover by up to 50 percent. So it’s a winning care model for management as well as residents, their families and staff.

Did you take a few minutes to write down the three things you’d want others to know about you if you couldn’t speak for yourself? Perhaps you’d like to let your loved ones know. As any one of us could someday find we need to rely on others for our care.