1. Murna Downs and Ans Epskamp
Human rights for people with dementia: the role of Dementia Care Mapping
Murna Downs and Ans Epskamp
June 2015

2. School of Dementia Studies
research
practice development
education & training

3. Overview
The problem of dementia Human rights for people with dementia Person-centred dementia care Dementia Care Mapping
10 October, 2017

4. The problem of dementia
10 October, 2017

5. The problem of dementia
Loneliness
Boredom
Inactivity
Social isolation
Memory loss Disorientation Language difficulties Incontinence Swallowing difficulties
10 October, 2017

6. Human rights for people with dementia
10 October, 2017

7. Human rights…why of course…..
10 October 2017

8. 2011
2009
10 October 2017

9. I have the right to be as independent as possible
be included in community
have carers who are well supported
access a range of treatment, care and support
be treated with dignity and respect
have carers who are educated
be regarded as a unique individual
Standards of Care, 2011

10. 2013
2014
2013
10 October 2017

11. Lack of high quality, personalised care
Care homes:
Lack of high quality, personalised care
Family not satisfied with quality
Too many going into hospital for avoidable conditions
2013

12. Much can and still needs to be done to improve the quality of care and quality of life for people with dementia living in care homes

13. Person-centred care, a philosophy
10 October, 2017

14. Person-centred approach
Personhood
Psychological needs
Person’s perspective
Enriched model

15. Personhood
Greatest threat to person living with dementia is threat of loss of personhood
Status of being a person in other’s eyes
Kitwood, 1997; Sabat, 2001

16. A person is a person through other people
Part of family and community
Interaction and relationships
10 October 2017

17. A person with: subjective experience psychological needs
10 October 2017

18. Needs for: attachment identity inclusion comfort occupation love

19. Role of interactions and relationships
Meet or fail to meet psychological needs

20. Person-centred care positive person work
personal-enhancing interactions
eg:
holding; affirmation; play; recognition; facilitation

21. Enriched model: many influences on living with dementia
10 October 2017

22. Summary Interactions and relationships Being with vs doing to
Multiple influences

23. Dementia Care Mapping: an observation tool and a process for change
10 October, 2017

24. …to move from old culture of care
Deficit
Disability
Dysfunction
Ignoring
Banishment

25. to person-centred care
Abilities
Individuals
Emotions
Relationships
Affirmation
Celebration

26. … a process for change Briefing Observation Findings Feedback
Action planning

27. DCM™ coding frames What staff do Personal enhancers
Personal detractions
August 2014

28. DCM™ coding frames What it’s like for people with dementia Behaviour
Mood and Engagement

29. DCM™ coding frames What it’s like for people with dementia
What staff do
Personal enhancers
Behaviour
Personal detractions
Mood and Engagement

30. Key focus Take the person’s perspective Staff awareness
Evidence-based critical reflection
Creative, collective problem solving

31. Dementia Care Mapping, the bigger picture
10 October, 2017

32. Decreased staff emotional exhaustion
Decreased agitation
Decreased falls
Decreased staff emotional exhaustion
Fewer negative and more positive emotional reactions during work
10 October 2017

33. 10 October 2017

34. 10 October 2017

35. Dementia Care Mapping, examples
10 October, 2017

36. Dementia Care Mapping™ Observation
Briefing
Observation
Findings
Feedback
Action planning
Engages whole team in problem solving
When I use DCM as part of enhancing my assessment, I ensure that the staff are aware of this and besides given verbal information, also ensure that written information is available for the staff to read. I also ensure that the person with dementia and the relatives are aware.
Is it part of evaluative cycle within our own organisation; I ensure that posters are available for patients and visitors on the day of the actual map, besides the general information about DCM
Raise awareness
Evidence-based reflection on quality of interactions

37. Feedback to the team PD you should eat your food Bill before
decreased well being over time
Field notes - Bill only ate half his meal
Bill shouting he is hungry
Bill given his food
Bill very agitated
10 October 2017

38. action planning
Enriched model
10 October 2017

39. agreed action plan Staff to gather information on
his food likes and dislikes
eyesight & ability to process visual information
Staff to give high calorie snacks more frequently
Mapper to examine impact of interventions on well-being in six weeks.
10 October 2017

40. Have educated care staff Respect and dignity
Bill, 6 weeks later
Met his right to
Have educated care staff
Respect and dignity
10 October 2017

41. Feedback to the team Frances Frances enabled & invalidated
Frances having her meal
Frances was asked by a carer whether she would like to fold some towels for her, which she proceeded to do and became engaged in the activity, concentrating on what she was doing. When she was finished she showed the basket for another carer, stating she was going to do more, so the carer turned the basket upside down and gave Frances the same towels again to fold, whilst Frances continued with the job, her mood changed, she started muttering to herself, showing slight signs of distress, which continued for 7 timeframes.
10 October 2017

42. Feedback to the team
The impact of staff interactions on Frances’s well being
How would you feel if?
Staff were shocked by the feedback, and part of the action plan is to engage Frances in working with the domestic in the home, negotiating a role each day.
Sometimes it is not always what is said, but how; tone of voice,
10 October 2017

43. action planning
Enriched model
10 October 2017

44. action planning with the team
Negotiate a role with Frances, e.g. folding washing, dusting, tidying the main living room, setting tables
Right for Frances to be included in the community
Right for Frances to be regarded as an unique individual.
10 October 2017

45. Feedback to the team Margaret disengage & sleep
This data was a map for just over two hours, to get baseline data about what life was like in the morning in the care home. The team identified five residents, they referred to Margaret is being settled, no problems.
The map however identified that if Margaret actually disengaged and fell asleep as there were no interactions going on for her, when she was offered opportunities to interact later in the morning, she did engage with this, looking and commenting on what she read in a magazine and helping setting the tables. Staff were busy doing tasks.
In the feedback before I explained the visual chart, I asked whether the care staff felt it had been a usual day for Margaret, which they confirmed, they were surprised at the data.
Utilising the information gathered the care staff together with her family, have provided objects for Margaret to interact with in the morning, and initiated inclusion by actively inviting her to join activities.
An overall action by the organisation was a change in working systems, identifying what needed to be done at a particular time in the day, ie bloods, to be done in the morning. Identified a member of staff to be in the lounge in the morning, to provide interactions and interventions. .
10 October 2017

46. Feedback to the team Lack of engagement and stimulation
What would you do if?
Settled and disengaged
Staff were shocked by the feedback, and part of the action plan is to engage Frances in working with the domestic in the home, negotiating a role each day.
Sometimes it is not always what is said, but how; tone of voice,
10 October 2017

47. Action plan with the team
Enriching the environment
Enabling staff to engage through change in work systems
Meet Margaret’s right inclusion and be treated as a unique individual
10 October 2017

48. Summary: DCM and human rights
Permission to stand back
Raises awareness
Engages the whole staff team
Evidence based reflection
Benefits residents and staff
10 October 2017

49. In conclusion Status quo unacceptable Things can be different
DCM is one approach
See the person
Supports staff development
10 October 2017

50. Thank you for listening…..
10 October 2017