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Murna Downs and Ans Epskamp
Human rights for people with dementia: the role of Dementia Care Mapping Murna Downs and Ans Epskamp June 2015
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School of Dementia Studies
research practice development education & training
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Overview The problem of dementia Human rights for people with dementia Person-centred dementia care Dementia Care Mapping 10 October, 2017
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The problem of dementia
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The problem of dementia
Loneliness Boredom Inactivity Social isolation Memory loss Disorientation Language difficulties Incontinence Swallowing difficulties 10 October, 2017
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Human rights for people with dementia
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Human rights…why of course…..
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2011 2009 10 October 2017
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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
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2013 2014 2013 10 October 2017
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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
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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
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Person-centred care, a philosophy
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Person-centred approach
Personhood Psychological needs Person’s perspective Enriched model
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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
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A person is a person through other people
Part of family and community Interaction and relationships 10 October 2017
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A person with: subjective experience psychological needs
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Needs for: attachment identity inclusion comfort occupation love
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Role of interactions and relationships
Meet or fail to meet psychological needs
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Person-centred care positive person work
personal-enhancing interactions eg: holding; affirmation; play; recognition; facilitation
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Enriched model: many influences on living with dementia
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Summary Interactions and relationships Being with vs doing to
Multiple influences
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Dementia Care Mapping: an observation tool and a process for change
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…to move from old culture of care
Deficit Disability Dysfunction Ignoring Banishment
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to person-centred care
Abilities Individuals Emotions Relationships Affirmation Celebration
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… a process for change Briefing Observation Findings Feedback
Action planning
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DCM™ coding frames What staff do Personal enhancers
Personal detractions August 2014
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DCM™ coding frames What it’s like for people with dementia Behaviour
Mood and Engagement
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DCM™ coding frames What it’s like for people with dementia
What staff do Personal enhancers Behaviour Personal detractions Mood and Engagement
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Key focus Take the person’s perspective Staff awareness
Evidence-based critical reflection Creative, collective problem solving
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Dementia Care Mapping, the bigger picture
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Decreased staff emotional exhaustion
Decreased agitation Decreased falls Decreased staff emotional exhaustion Fewer negative and more positive emotional reactions during work 10 October 2017
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Dementia Care Mapping, examples
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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
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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
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action planning Enriched model 10 October 2017
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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
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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
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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
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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
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action planning Enriched model 10 October 2017
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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
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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
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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
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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
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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
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In conclusion Status quo unacceptable Things can be different
DCM is one approach See the person Supports staff development 10 October 2017
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Thank you for listening…..
10 October 2017
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