Dementia Care: The Caregiver Role in ‘Wellbeing’

February 12, 2014

TogethernessThis week we discuss how it is you, the caregiver, and the qualities you bring to the caregiving relationship, that define the ‘outcomes’ when we deliver care for someone living with a dementia

In my last blog I introduced you to the concept of ‘wellbeing’ and if you recall I wrote “It is vital that older people feel worthwhile, that they have a sense of self- importance and control and that they feel they can contribute and hold influence over their own lives. Living with a dementia does not rob someone of these needs: it increases their  importance”.

So perhaps we should begin this week by defining dementia, so that we can unpick the importance of understanding why I have begun my series of blogs with the notion that people living with dementia experience wellbeing, and that it is you, the caregiver, who can maximise this experience. Next week we will look at how you also contribute, purposefully or not, to the opposite, which in dementia care we refer to as ‘ill-being’.

What is ‘dementia?’

Dementia itself is not a specific illness or any single disease process, rather we use the term dementia to describe a collection of related diseases and pathologies. When different though potentially related disease processes lead to a similar outcome, then the broad pattern of commonly experienced symptoms is grouped together for ease of reference, and this ‘grouping’ is referred to as a syndrome.

Therefore, we can state: Dementia is a term used medically to describe a collection of various conditions or disease processes which produce similar signs and symptoms and therefore these are referred to collectively as the dementias.

There are well over 100 different types of ‘dementia’ and it is probable many more will come to light in the coming years. The general public commonly believe however that any reference to ‘dementia’ means someone with Alzheimer’s disease or conversely that Alzheimer’s disease is dementia. For clarity dementia of the Alzheimer’s type is only one of the ‘dementias’.

Now that we understand what we are discussing, we can state definitively that although the spectrum of specific conditions generally grouped under the label of dementia is large and that outcomes may converge, these individual processes have very specific presentations, particularly in their early stages. This means it is vitally important for you as professional caregivers to understand how we should all be responding collectively to these various unique presentations (characteristics and associated behaviours).

We must also understand that these presentations (behaviours) in many instances are related directly to the type of or the ‘stage’ of dementia (usually the maturity of the disease) the person is experiencing, their pre-existing (often referred to as pre-morbid) personality and how they are reacting to the dementing process, its effects, where they are living and to bring us back to our blog subject matter, how they are being treated.

Changing the way we think about someone living with a dementia

The late Professor Tom Kitwood wrote about a ‘conferred condition’ and in his widely influential book Dementia Reconsidered (Kitwood, 1997) he describes this condition as ‘personhood’, which is: ‘A standing or status that is bestowed upon one human being, by others, in the context of relationship and social being. It implies recognition, respect and trust.’

Kitwood and colleagues changed the face of dementia care: they at once simplified and complicated the care of those living with a dementia. Before the 1990s, by and large, care for someone living with a dementia concentrated on keeping the person fed, warm and safe. There was a tragically mistaken widespread belief that dementia somehow took away what made a person themselves and what was left was a body clinging to life, but life without understanding or dignity.

Kitwood and colleagues begun to postulate and then to evidence, that in fact, throughout the dementing experience, the person remained and was desperately trying to remain in contact, in control and to retain their ‘wholeness’ despite the fracturing of their memory, their cognition, and for many their lifestyle, dwelling place and closet relationships.

From Kitwood’s work and developed by his extended team at Bradford University the process of dementia care mapping (DCM) was born and this is now a worldwide used observation tool, that is designed to assess as to whether a care setting and its environment is delivering care that produces wellbeing (or ill-being) for those living within.

You will remember in my last blog I stated that NICE have now standardised wellbeing as a quality indicator for older persons care. With this in mind we will close this week by looking at what Kitwood described as the essential ‘requirements’ for a healthy outcome for those living with a dementia in a care setting, and how these come directly from the following qualities possessed of you – the caregiver.

  • Recognition. The caregiver brings an open and unprejudiced attitude, free from tendencies to stereotype or pathologies and meets the person with dementia in their uniqueness.
  • Negotiation. The caregiver sets aside any ready- made assumptions about what is to be done and dares to ask, consult and listen.
  • Collaboration. There is a deliberate abstinence from the use of power and hence from all form of imposition or coercion; ‘space’ is created for the person with dementia to contribute as fully as possible to the action.
  • Play. The caregiver is able to access a free, childlike and creative way of being.
  • Stimulation. The person with dementia receives stimulation through the direct avenue of the senses; and this means that the caregiver is at ease with their own sensuality – untroubled by guilt or anxious inhibition.
  • Celebration. Beyond the burdens of the immediate demands of work, the caregiver is open to joy.
  • Relaxation. The caregiver is free to stop active work, for a while; the caregiver identifies with the need people with dementia have to slow down and allow both body and mind respite.
  • Validation. The caregiver goes beyond their frame of reference in order to have an empathetic understanding of the other; cognition is tuned down and sensitivity to feeling and emotion is heightened.
  • Holding. Whatever the distress the person is undergoing the caregiver remains fully present, steady, assured and responsive, able to tolerate the resonance of all disturbing emotions.
  • Facilitation. The carer shows a readiness to respond to the gesture made, not forcing meaning upon it, but sharing in the making of gesture and enabling it to occur.
  • Creation. The creative action made by the person with dementia is seen as such and the caregiver responds without taking control.
  • Giving. The caregiver is humble enough to accept whatever gift of kindness or support the person with dementia bestows, and honest enough to regard this in the context of their own needs.

Paul Smith – Dementia Care Expert


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