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Evaluation article: Providing excellent dementia care

Published: Monday, 16 June 2014

Dr Daniel Nightingale looks at examples of how true person-centred care for people living with dementia can work in practice, using case studies from his experience.

Summary

  • Excellent care need not cost a lot in additional resources.
  • Well-being can be achieved by engaging with the reality of the person with dementia and validating their beliefs and experiences.
  • Meaningful and valid life experiences are essential for someone living with dementia.
  • Communication should be at the individual's level.
  • A feeling of inclusion is important for the person living with dementia.

What is excellent dementia care? How do we ‘see’ and ‘feel’ excellent dementia care? We often hear the phrase ‘true person-centred care’ but it is easy to use such buzz words. In the following two case studies I aim to demonstrate that excellent dementia care is provided by caregivers who follow our Five Facets of True Person-Centred Dementia Care:

  • Active engagement with people living with dementia by entering that person’s reality and validating their beliefs and experiences
  • Can overcome challenges to embark on the journey of dementia with those already on it
  • Can evidence signs of well-being through valued inclusion
  • Provide meaningful and valued life experiences
  • Can communicate at the individual’s level.

The Magistrate

Les lived in a nursing home in Lancashire and had formal diagnoses of mixed dementia (both probable Alzheimer’s disease and vascular dementia). Les would often become anxious, raising his voice and shouting ‘Send him down’. These words were very often directed at fellow residents but occasionally at a member of the direct care team. Les was never physically aggressive, but he was a tall, well-built guy whose tone of voice could be very intimidating. As a team, we implemented a system we called The Five Facets of True Person-Centred Dementia Care as highlighted above. By doing this, we were able to develop a support plan for Les that maintained his sense of well-being through personhood. Our overall aim is always to achieve ‘rementia’ (this is a phrase coined by the late Professor Tom Kitwood and refers to the regaining of lost cognitive and functional abilities).

Les was a magistrate for many years. He only quit with the onset of dementia. For a whole week the care team observed Les and monitored his behaviour. An adapted version of Dementia Care Mapping was used to achieve this. Once completed, and the data collected and analysed, we were able to sit down with Les and his wife to develop the support plan. The tool used for this was a shared action plan (SAP), which ensures involvement throughout the entire process and puts Les firmly at the centre of all decision-making. Many years ago, both Les and his wife were members of an amateur dramatics society. Being a thespian, combined with his past role as a magistrate, gave us an idea to address the challenges being presented by Les. Note, he had become rather unpopular with his fellow residents as they were intimidated by his shouting and aggressive tone.

We all decided to write a play called The Magistrate and involved four other residents who had ambitions to be budding actors. The play was very short, but all had a role to play. Of course Les was the magistrate. The phrase he would use was ‘send him down’. This of course was aimed at the convicted prisoner who was played by a fellow resident.

This approach encompassed all our Five Facets of True Person-Centred Dementia Care and, as a by-product, helped Les become more accepted by his peers through the development of friendships.

Positive and successful outcomes are achieved by entering the realities of the person(s) living with dementia and by celebrating their existing skills, competences and abilities. In the case of Les, the play was enacted a number of times each week. The inappropriate shouting ceased and the overall well-being of each individual living in the nursing home was greatly improved.

Where is she?

The use of doll therapy has now become more widely used. However, it remains shrouded in controversy. Perhaps this following case can help reduce some of the opposition.

Mary lives in a residential care home in the Midlands. She communicates her needs through a series of sounds and body language. Mary is no longer able to vocalise in sentences. I was asked to see her because she would wake in the middle of the night, open doors, drawers and cupboards and scream. Obviously distressed, there were no signs of well-being at this point.

Investigating Mary’s past threw up some very interesting facts about her life. However, there was also tragedy in that as a 21 year old her baby of six months had died from unknown causes. As a team, we developed a doll therapy support plan with full inclusion of Mary and her only surviving daughter Anna.

This support plan involved a life-like doll being placed in a cot in Mary’s room. The cot was positioned next to her bed. During that day, Mary did not interact with the ‘baby’ or even acknowledge its presence, though she spent some time in her room watching TV. However, Mary did not make any noise during the night. At midnight, the caregiver checked on her. She was sound asleep and the doll baby remained in its cot. At 2am, when she was checked again, the baby was not in its cot. As the caregiver looked across at Mary, she was cuddling the baby in her arms.

Mary did not wake until approximately 7am when she entered the lounge area with the ‘baby’. For the first time in weeks she smiled – and she had slept well too!

Today, one will find Mary, her friend Carol and the baby sat together on a sofa in the lounge. It took a very short time to change Mary’s state of ill-being into a state of well-being. She has a sense of personhood; a sense of who she is, i.e. mum to the baby. Dementia can diminish people if it is allowed to do so. However, we all have the ability to stop that process through interactions and interventions that are far more powerful that the biological disease symptomatic with dementia.

A word of caution

Please use doll therapy appropriately. There are many articles available to help. Please see the references below. The two cases highlighted above demonstrate that true person-centred care can be achieved relatively simply; that problems are only ever solutions in disguise and that excellent care need not cost a great deal of additional resources.

References

  • The DTS Five Facets of True Person Centred Care (Dementia Therapy Specialists: www.dementiatherapyspecialists.com)
  • James, I A, Mackenzie, L, and Mukaetova-Ladinska, E, ‘Doll use in care homes for people with dementia’, in International Journal of Geriatric Psychiatry, 21, 11 (2006), 1093-98.

About the author

Dr D J Nightingale is Dementia Consultant with Retirement Villages Ltd; Founder and CEO of Dementia Doctor (UK) and Co-Founder and CEO of Dementia Therapy Specialists (US). This email address is being protected from spambots. You need JavaScript enabled to view it.

This article was first published in the October 2013 issue of Quality & Compliance Magazine. 

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