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Measuring quality outcomes for people with dementia
Dr Karen Dodd
What is an outcome?
What are we talking about?
•Outcomes for a whole area?
•Outcomes for a service?
•Outcomes for an individual with dementia?
Definition:
‘a measure of the quality of care, the standard against which the end
result of the intervention is assessed.’
What is an outcome?
• What are the standards that we are trying to achieve?
• How do we know what we are doing is meeting these standards and
delivering Quality Outcomes across services and for individuals?
Quality outcomes in dementia care review Janicki (2011)
Reviewed recommendations of international dementia organisations
and proposed a framework for dementia care quality measurement.
Agencies should promote dementia-capable practices that include:
– Early and periodic assessments
– Physical modifications in living settings
– Specialised staff education for stage-adapted care
– Flexible long term services that recognise and plan for
progression of decline and changes in functioning
Quality Outcome Measure for Individualswith dementia (QOMID)
We wanted to develop a quality outcome measure that could look at thequality of care that the person is receiving.
We wanted it to be:• Used with anyone with dementia• Was stage specific• Gave a clear definition of what needed to be achieved• Could be used to help both evaluate quality outcomes and plan to
improve it
QOMID meets the recommendations for the outcomes framework
reviewed by Janicki (2011)
Describing the QOMID
QOMID is Quality Outcome Measure for Individuals with Dementia.
• consists of 17 domains which explore the key areas that ensure that the
person with dementia is experiencing a good quality outcomes
• staged for the three main stages of dementia – suspected/ early; mid and late
stage.
• although the domains are the same for each stage, the description of quality
outcome may change across the stages to reflect the different requirements
as dementia progresses.
• Available at http://www.bps.org.uk/networks-and-communities/member-
microsite/dcp-faculty-people-intellectual-disabilities
Domains
1. Person Centred Approaches to Support
2. Positive Risk taking3. Respect for Human Rights4. Consistency of approach5. Interaction with others6. Emotional reassurance to
cope with changes7. Orientation8. Daily Living
9. Carrying out preferred activities
10. Flexibility of support11. Environment12. Behaviour13. Health14. Support from well co-
ordinated agencies15. Nutrition16. Mobility17. Continence
Staging of dementia
• The professional / navigator completing the QOMID needs to use a combination of results from formal assessments together with their professional judgement to decide which stage of dementia the person is currently experiencing.
• There is a brief description of each of the stages and also linked into the care clusters being used in Payment by Results.
– Early stage dementia - People who fall into Care Cluster 18 (Cognitive Impairment- Low Need) may fall into this group.
– Mid stage dementia - People who fall into Care Clusters 19 (Cognitive Impairment- Moderate Need) or Care Cluster 20 (Cognitive Impairment or Dementia Complicated- High Need may fall into this group.
– Late stage dementia - People who fall into or Care Cluster 21 (Cognitive Impairment or Dementia- High Physical or Engagement) may fall into this group.
AREA SUSPECTED / EARLY STAGE DEMENTIA
MID STAGE DEMENTIA LATE STAGE DEMENTIA
7. ORIENTATION
The person is oriented to time and place through approaches that are appropriate to their level of ability. Their support plan describes routines that are likely to be important to the person as the dementia progresses.There is evidence that the team has made plans to ensure that any future changes that are envisaged for the person are properly considered and take account of possible effect on the person’s orientation
The person is able to understand their daily routine through the use of appropriate cues and aids e.g. daily picture timetable, picture menus, picture staff rotas.There is evidence that the team has made plans to ensure that any future changes that are envisaged for the person are properly considered and take account of possible effect on the person’s orientation
The person feels safe in having a consistent and familiar routine.
8. DAILY LIVING
The person is able to complete personal care and daily living activities as much as they are able, but without pressure. The person’s abilities and additional assistance required to help maintain independence are recognised, and the person is supported appropriately e.g. having increased prompting.
The person is able to complete parts of personal care and daily living tasks that they can do and are assisted as necessary so they do not fail. Their support plan details the additional assistance required to help maintain as much independence as possible in a failure free manner.
The person experiences care that is dignified and respectful of them as a person for all their personal care and daily living activities.
11. ENVIRONMENT
The person lives and spends their time in environments that are familiar to them and can find their way around easily with depth perception problems minimised.e.g. flooring colour is consistent.
The person lives and spends their time in environments that are familiar to them and have all the necessary aids/adaptations to help them find their way around and meet their needs, and minimises risks of falls.e.g. red toilet doors, red toilet seats, colour contrasts, good signage, handrails, chairs at right height.
The person lives and spends their time in environments that are familiar to them and have all the necessary adaptations to meet their needs.e.g. hoists, adapted bath / shower, special bed, appropriate wheelchair and armchair, changing facilities.
Who should complete the QOMID?
• Completed by the professional / navigator in discussion with the
relevant people for each stage of dementia.
• Involve the person wherever possible
• Gain additional information from family, support staff,
advocates, care managers or anyone else involved with the
person and their support.
Scoring• Decide which stage of dementia the person currently falls into,
based on current assessment and professional opinion.• Use the column for that stage of dementia and rate each
domain using the following rating scale:
• For each domain, circle the rating at this current time. All domains should be completed. Record the evidence you have used to make the rating.
• If the domain is rated less than 4, specify what needs to happen to improve the person’s quality outcome in that area of their life.
Expected scoring
• The aim, in supporting the person with dementia, is for them to have a
high quality experience throughout the progression of their dementia.
• As dementia is a progressive condition, it is vital to ensure that the
person’s changing needs are recognised and met.
• This means that as the person moves into each stage of dementia, the
quality outcome score for each domain may start at 2 or 3, but as people
work together to improve the person’s quality outcome, the scores should
reach the maximum of 4 in each domain.
• This may mean that scores may fluctuate during the course of the
dementia as support ‘catches up’ with the person’s changing needs.
Forward planning
• The QOMID is designed to help the support team and the professionals to
work with the person to both prevent deterioration in quality and to forward
plan effective care.
• For each domain that is scored at less than 4, the support team is asked to
specify what needs to be put in place to improve the person’s quality
outcome for that domain.
• These actions can then be included in the person’s support plan.
• In addition, by looking at the descriptions for the next stage of dementia,
people can begin to help the person and their supporters to think about
what needs to be put in place to maintain their quality outcome.
Validation of QOMID
• Statistical analysis of the data from 73 people show that it is a reliable
tests and that all domains contribute towards the overall measure of
Quality Outcome (Cronbach’s alpha is 0.848).
• 92.5% of participants found it easy or fairly easy to use, and 95.5% said
instructions were easy or fairly easy to understand.
• Both majority of participants in OPMH and LD found it easy of fairly easy
to assign the dementia status.
• No significant difference in LD v OPMH in easy of use, or understanding
the instructions.
• Mean time to administer was 31 – 45 minutes
Unsolicited feedback
• ‘a very useful way of structuring reviews, and very keen to use it at the next review as an evidence-based way of monitoring change.
• Very helpful in focussing the group on how to improve support – staff in the support services found the process very interesting and helpful as well and thanked us for the opportunity for discussion.
• We have found the questions extremely helpful and a good way to review our care as well as that of the residential homes.
Mid Stage Scenario
• James is a 58 year old man with Down’s syndrome and in mid stage dementia. He lives in a 6 bedded LD residential home in a complex of 4 homes, which have been through difficult times. It is now more stable and the manager of the complex has now decided that this home will become a specialist LD & dementia home.
• Undertook the QOMID with staff, family and James in March 2013
• Overall score was 57 – good quality outcome
Identified areas of need
Domain Score Actions needed
11. Environment 2 Some work has started but a fuller programme of environmental modifications is needed e.g. red toilet seats, more signage etc
13. Health 3 DisDAT to be completed re non verbal ways of assessing distress for James. More attention to be paid to need for Vitamin D and DH guidance
16. Mobility 3 Shoes need to be checked regularly for fit, and staff to check walking regularly
17. Continence 2 Mattress on bed needs to be sortedPads need to be sorted – pull ups during the day and flexitab at nightStaff to ensure bedtime routine is followed. Toileting programme and monitoring chart to be started asapCommunity Nurse to follow-up re continence products and funding
Roll out of QOMID
• Accepted for publication in a journal article
• Presenting at various forums, conferences etc
• Being used for all people with Down’s syndrome and dementia
in both Cornwall and Surrey
• Want people to use it and submit anonymised data via a survey
monkey link so can do further analysis on it.
Questions and Discussion
Dr Karen DoddConsultant Clinical PsychologistSurrey & Borders Partnership NHS FT
kssahsn.net
