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One day I was approached by a nurse on the day care unit. She explained that she wanted to put on a dementia talk in the local community to raise awareness; only, she had nobody to give the talk. Despite having only qualified as a doctor six months previously and being no expert in dementia, I obliged. I suppose I liked the prospect of being able to reach out to the community as a doctor and impart a little knowledge. 

A few weeks later I sat down to write the presentation and after some deliberation, I realised what a monumental task I had taken on. Writing a presentation based on epidemiological facts and treatment protocols did not seem relevant, engaging or special enough for the dedicated carers, the family, the friends and the sufferers of dementia. This condition collectively affects more people than cancer, heart disease and strokes put together (1), yet most live without a diagnosis and without support (2a). After having read some literature, I realised how fragile ones identity is when battling against dementia, the apparent loss of the person as the disease progresses can feel isolating for both the sufferer and the carer. Preserving identity and the facets that make an individual suffering with dementia a person is a difficult task. It seemed the most important aspect of my talk would be to teach carers how best to communicate with sufferers and provide a stimulating environment, in order to protect their identity.

The problem is, traditionally the general public have been taught that dementia is a death that leaves the body behind. The person they once were is no longer recognisable. As a result the sufferers of dementia can be perceived as lesser beings that are not recognised as an individual with a unique history and cannot benefit from social interaction. However, this perception is far from the truth. They have the capacity to experience relative well-being and ill-being and this is strongly influenced by the behaviours of others toward them (2). Sufferers maintain the ability to experience the same range and depth of emotion as any other and therefore deserve the recognition as a person, with a guarded personhood.

But what exactly is personhood and how can it be protected?  It is a term that is difficult to define and ethicists and religious figures have differing ideas of this concept.  Professor Tom Kitwood was arguably the first to recognise the importance of maintaining personhood in dementia.  He stated that Personhood was sacred and unique and that every person had an ethical status and should be treated with deep respect (2).

Fundamentally he believed that personhood was formed through interpersonal relationships; 

“It 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”. (2) If personhood is a social construct, then people with dementia (a group who find engaging with others more challenging) are vulnerable to having their personhood eroded.  The further their personhood is stripped away the more isolated they become, perpetuating the problem.

So how can personhood be protected? Enter the person centered care approach.  First developed by Carl Rogers in 1961, he emphasized the importance of treating the whole human being (3). Dawn Brooker (4) then built upon this concept by developing four principles of person centered care; valuing the person and their family, treating the person as an individual, taking the perspective of the person when planning and providing care and ensuring a positive social environment exists in which a person can experience relative well-being.  These principles were otherwise known by the acronym VIPS (valuing, individualism, perspective and support). Furthermore Nolan et al. (5) developed the ‘senses framework’ as a way to think about the psychological needs of people with dementia, family carers and staff in care homes. The six senses include; sense of security, belonging, purpose, continuity, achievement and significance.  

Person centered care can be promoted through activities which; affirm identity and sense of self, encourage creativity and communication, and allow for the re-experience of happier times in life. There are many ways in which one can affirm these qualities, for example activities which encourage reminiscence have proven to be of value to dementia sufferers (6). 

Collective encounters (7) published ‘A pocket Guide to Art Activities for People with Dementia’. It provides creative ideas to stimulate reminiscence in the group setting. One activity uses a creative writing exercise as a medium to encourage reminiscence. A topic is chosen e.g. past holidays or special events, along with the five senses (sight, smell, taste, touch, hear) as a source of inspiration to create a sentence about a specific memory. Each person in the group creates a memory sentence using one of the five sensory modalities. Then the five sensory sentences are combined to create a group poem. This activity not only encourages affirmation of sense of self and identity, but also encourages creativity and communication. Additionally, a Haiku group exercise can be used as a memory tool. Again a memory topic is chosen along with a syllable restriction of either 5 or 7 syllables in order to construct a poem in haiku format.

Having done some research into creative ways of protecting the personhood of dementia sufferers, I decided to integrate this interactive tool into my presentation.  I hoped it would be a way of de-stigmatizing and de-medicalising dementia, but could also provide hope to the carers and family of dementia sufferers.  It was a special experience to watch on, as carers and sufferers became engrossed in the same task.  It was more touching then to read the writing produced. To get insight into someone’s past through a single sentence makes you feel privileged and connected to that person. It creates an atmosphere of warmth and affection, a perfect environment to nurture personhood.

Below you can read some of the poems created from the session:

The smell of the flowing river water was fresh and lovely

I heard the music playing in the garden

An aroma of Asian food and flowers – 

Wood, new furniture in the night market

I can touch the sand, so soft so smooth

The delicious taste of various tropical fruits and crumble with ice cream makes the day complete

I tasted the fruits! 

And they were very sweet and juicy 

 

See the waterfalls cascading down the mountains like tears in the rain 

The taste of fresh mackerel served in Bengal was delicious 

The soft touch of roses on my cheek

While I was walking along the golden seashore 

I smell the wonderful fresh breeze and scent of the sea

The smell from the sea breeze was soothing 

 

The strong smell of onions when jenny started cooking

I liked to touch the sea water 

I looked across at the beautiful colours of green, blue and purple and felt satisfied

Water falls

Trickling down from the rock

Touch the empty tomb in Israel 

 

I felt the mango trees 

I felt the juicy st Julian mango trickling down my fingers

The taste was just as good as the smell

All the boys were eating them 

So many different dishes to taste 

 

Touchdown! The aircraft in Atlanta, USA 

The sound and smell of summer came rushing in through the open door waking me up 

I could hear other people talking different languages

The birds singing in the trees

The taste of ripened mangoes lingers on my palate 

 

Anniversary

Come dancing with me tonight 

Don’t get me drunk now 

 

So they got engaged

Holy Spirit inspiring 

Joyful for my life

 

Beautifully placed

My accommodating friends

Accompanying 

 

Dear Husband Raymond

The quick brown fox jumped

‘Tis spectacular 

 

Bloody mindedness

Drive ‘round seven days a week 

My son surprised me

 

The balloon went bang

Thinking ‘bout compositions 

And many parties 

 

References 

1. Alzheimer’s Research UK website; 10 things you need to know about dementia.  Accessed on 26.7.16, available at www.alzheimersresearchuk.org/about-dementia/facts-stats/10-things-you-need-to-know-about-prevalence

2. Kitwood, T. (1997) Dementia reconsidered: the person comes first. Buckingham: Open University press. 

3. Rogers, C. (1961) On becoming a Person. Houghton Miffin Boston. 

4. Brooker, D. (2007) Person-centered dementia care: making services better. University of Bradford. London: Jessica Kingsley

5. Noan, M., Davies, s. and Grant, G. (2001) Working with older people and their families; Key issues in policy and Practice. Buckingham: open university press. 

6. Gibson, F. (2004) The past in the Present: Using reminiscence in health and social care. Baltimore, MD: Health Professions Press. 

7. A Pocket Guide to Arts Activities for People with Dementia, collective encounters

 

Content provided by Dr Anya Selwyn BSc MBBS.

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