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Wessex Strategic Clinical Network Dementia Pathway Redesign- Phase 2 End of Project Report Christine Greenwood May 2017 Dementia Diagnosis Toolkit
Wessex Strategic Clinical Network
Dementia Pathway Redesign- Phase 2
End of Project Report
Christine Greenwood May 2017
Dementia Diagnosis Toolkit
1
2
Contents
Context & Executive Summary ................................................................................... 4
1 Introduction ............................................................................................................. 7
Background ................................................................................................... 7 1.1
Objectives ..................................................................................................... 7 1.2
2 Methodology ....................................................................................................... 8
Steering Group .............................................................................................. 8 2.1
Engagement with GPs and Care Homes ...................................................... 8 2.2
Dementia Diagnosis Toolkit Assessments .................................................... 9 2.3
Data Collection .............................................................................................. 9 2.4
3 Resources ......................................................................................................... 10
4 Results .............................................................................................................. 10
Engagement with Care Homes/Telephone Questionnaire .......................... 10 4.1
Data Collection ............................................................................................ 10 4.2
Referral Information: ............................................................................. 11 4.2.1
Residential or Nursing Home: ............................................................... 11 4.2.2
Dementia Diagnosis Toolkit Assessment Information ................................. 12 4.3
Toolkit Outcomes .................................................................................. 12 4.3.1
Satisfaction Questionnaires .................................................................. 13 4.3.2
5 Post Diagnostic Care Outcomes ....................................................................... 13
6 Benefits ............................................................................................................. 14
7 Achievement of Key Objectives......................................................................... 15
8 Risks and issues ............................................................................................... 16
9 Lessons learnt ................................................................................................... 17
10 Conclusion ..................................................................................................... 18
Appendix 1: Dementia Toolkit Consent Form ................................................ 19
Appendix 2: Map of GP contacts ................................................................... 21
Appendix 3: Adapted DeAR-GP .................................................................... 22
Appendix 4: Dementia Toolkit Telephone Questionnaire ............................... 24
Appendix 5: Contacts to Care Homes ........................................................... 25
Appendix 6: Dementia Toolkit Satisfaction Questionnaire (R) ....................... 26
Appendix 7: Dementia Toolkit Satisfaction Questionnaire (CH) .................... 29
Appendix 8: Dementia Toolkit Satisfaction Questionnaire (GP) .................... 31
Appendix 9: Examples of personalisation following a Dementia Toolkit
Assessment ................................................................................................... 32
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4
Context & Executive Summary
“The aspiration is not to persuade GPs to diagnose dementia but to facilitate information so GPs can feel safe about diagnosing dementia in certain clinical situations. There is a need to empower colleagues to be able to make a diagnosis if they think that it is clinically justified and appropriate.”
Professor A Burns, National Clinical Director for Dementia, NHS England and
Dr P Bagshaw, South West Network Clinical Director
The Dementia Diagnosis Toolkit has met the ambition expressed in Professor Burns
and Dr Bagshaw’s statement as the project has demonstrated :-
Improved communication of an existing dementia diagnosis between a GP and a care home
Improved opportunity for memory assessment for care home residents
Improved opportunity for GPs to make a diagnosis of dementia where clinically appropriate
Improved opportunity for the quality of personalised care for care home residents
Executive Summary The Dementia Diagnosis Toolkit was developed in response to a number of critical
reports in regard to both the dementia diagnosis rates and the care of older people
with dementia in care homes. The projects primary aims, all of which were met, were
to:
improve existing communication between GP’s and Care Homes,
improve the opportunity for residents in care homes to receive a memory
assessment, and diagnosis of dementia if present
enable care homes to better support residents with a diagnosis of dementia,
support GP’s to make a diagnosis where clinically appropriate.
Outcomes
The Dementia Diagnosis Toolkit was trialled with 54 care home residents referred for
memory assessment. Similar numbers of referrals were received from care homes
and residential homes.
The outcome from each Dementia Diagnosis Toolkit assessment for each of the 54
referrals are illustrated below. In 13 (24%) instances a diagnosis previously known
only to the GP was shared with the care home. In 35 (64%) cases use of the toolkit
indicated a clear memory concern, with sufficient information provided to allow GP
diagnosis in half of these residents, or onward referral where there was specific
indication to do so.
5
The average time taken to complete a Toolkit Assessment by a specialist memory
nurse was 49 minutes, but it took only 9 minutes for the GP to review the
assessment and make a decision on diagnosis of dementia, or onward referral (if
needed).
In 51 (94%) cases improvements to care plans were documented and shared with
the care staff including the areas shown below.
The Toolkit supports NICE guidance issued in 2015 www.nice.org.uk/guidance/lgb25
which highlights the health benefits for older people of a dementia diagnosis along
with the safeguarding responsibilities of local authorities for residents in care homes.
These benefits include reducing medication errors, enhanced monitoring for
malnutrition, falls prevention, reducing healthcare infections, avoiding delirium & the
monitoring for depression and a reduction in the additional costs of care.
6
The Dementia Diagnosis Toolkit clearly offers enhanced communication between
GP’s and Care Homes whilst ensuring they benefit from knowing their residents have
a clear diagnosis and the improvements to care that this brings. We further identified
an impact on family and friends of the resident leading to reduced friction between
them and the care home as well as improved communication between them and
health services. The Toolkit helps support diagnosis of dementia in an appropriate
setting, minimising GP time required, and the need for secondary care review.
Spread and sustainability
A total of 35 care homes were visited as part of Phase 2. A wider survey of care
homes was also undertaken to estimate the scale of memory concerns and thus
estimate potential numbers of undiagnosed dementias. The 35 care homes fell into
three groups as shown.
5 (14%) of the homes visited 0 persons with identified memory concerns
25 (72%) of the homes visited 1-4 persons with identified memory concerns
5 (14%) of the homes visited 5-7 persons with identified memory concerns
Based on these proportions, the potential for improvements in diagnosis rate and in
personalised patient care across Wessex CCG’s are shown below.
CCG No of Care homes in the area
(based on estimates known to
the project)
Potential for new diagnoses in
CCG area
Isle of Wight 30 43 to 116
Portsmouth 40 57 to 154
Southampton 40 57 to 154
NE Hampshire and Farnham 26 37 to 100
North Hampshire 15 21 to 58
Fareham and Gosport 15 21 to 58
South East Hampshire 15 21 to 58
Dorset 147 209 to 567
West Hampshire 139 197 to 537
There is potential to make between 663 to 1802 new care home dementia diagnoses
in Wessex using the Toolkit. The Clinical Network will therefore continue to work with
local CCGs in Phase 3 of the project with the following three key objectives
Work with CCGs to identify commissioning opportunities for use of the Toolkit in
order to directly influence the DDR
Develop the core competencies to enable wider use of the Toolkit in staff groups and
deliver an initial Toolkit training programme
Work with care homes to identify improvements in post-diagnostic benefits and
improvements in care relevant to care home residents
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1 Introduction
The Prime Minister’s Challenge 2020 on Dementia stated that people should have
equal access to assessment for dementia with appropriate post diagnostic support.
The Challenge also encouraged GP’s to play a leading role in the coordination and
continuity of care for their patients.
The NHS Five Year Forward View and planning guidance 2016/17 included
mandates on maintaining a minimum of two thirds diagnosis rates for people with
dementia and to improve the quality of post-diagnosis treatment and support.
In response, the Wessex Strategic Clinical Network has led on a series of Dementia
Pathway Redesign projects. In Phase 1, the Dementia Diagnosis Toolkit was
developed in collaboration with the Memory Assessment and Research Centre
(MARC), Bournemouth University Dementia Institute (BUDI) and the Collaboration
for Leadership in Applied Health Research and Care (CLAHRC). The aim of the
Dementia Toolkit was to support GPs to make a diagnosis for those living in care
homes. A small pilot project indicated the value of this Toolkit leading to a wider trial
in Phase 2.
Background 1.1
Data from Phase 1 of the project identified enthusiasm by GPs to diagnose dementia
where they were supported to do so, and where it was clinically appropriate. The
potential to offer dementia assessments within a care home setting would ensure
equity of access to diagnostic assessment across the care pathway.
The role of GPs in making a diagnosis could also have a positive impact on the
dementia diagnosis rates measured by NHS England.
Phase 2 of the project was initiated to evaluate use of the Dementia Diagnosis
Toolkit, incorporate more CCG areas and engage with a wider stakeholder audience
including care home mangers and GPs. The project was also aimed at assessing
current post diagnostic support relevant to care homes, and improving personalised
care planning.
Objectives 1.2
Our overall objectives for Phase 2 were to evaluate the potential of the Toolkit in (a)
supporting dementia assessments in a care home setting, (b) assessing the extent to
which we could support GPs to make dementia diagnoses without direct secondary
care involvement, and (c) evaluating ease of use of the Toolkit by clinical staff.
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The key objectives are listed below and were to:
Test the diagnosis toolkit to provide proof of concept across a wider audience
Propose iterative developments to the Toolkit to ensure it is fit for purpose
Develop a sustainable model for integration of the toolkit into non-traditional
workforces
Work with care givers post diagnosis to inform patient centred care planning
Develop an IT solution, working across Wessex platforms, to facilitate
reduced data input and information sharing
Analyse post diagnosis care improvements across Wessex and develop
sustainable models for post diagnostic treatment and support
2 Methodology
Steering Group 2.1
At the commencement of Phase 2 the Toolkit was available in document form but
required the development of a supportive governance framework to ensure the pilot
was managed appropriately. The Wessex Strategic Clinical Network (SCN)
established a project steering group that included representatives from the Wessex
Clinical Commissioning Groups (CCG’s), Hampshire County Council (HCC), medical
and nursing leads. The steering group provided clarity on the roll out of Phase 2 of
the project and had particular input to the issue of individual consent and the
appropriate clinical and information governance framework for the project. A Toolkit
Consent Form, (see Appendix 1) was developed and all documentation was held
securely within Southern Health Foundation Trust or Dorset Healthcare University
NHS Foundation Trust as appropriate.
Engagement with GPs and Care Homes 2.2
Introducing the Toolkit Assessment to GPs was essential as all residents would
remain their patient throughout. Information about the Toolkit was sent out to all 119
GP Practices across West and North Hampshire CCGs and Southampton City CCG.
(see Appendix 2). In North East Hampshire the CCG initiated contact with the GPs in
their area.
From this contact four practices expressed an interest to know more about the
Toolkit Assessment. (see Appendix 2). When visited, these practices indicated that
care homes should be contacted direct regarding any referrals and the practice
would then provide the necessary information and follow up on outcomes.
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Permission was given by the South London Health Initiative to adapt their DeAR GP
letter format, (see Appendix 3). The DeAR-GP acted as a means of supporting care
home managers to qualify and quantify why they thought a resident could benefit
from a Toolkit Assessment. Although this document was very useful, during the pilot
it was seldom completed by care home staff.
The number of referrals over the first months was very low. The approach to care
homes was therefore modified by creating and using a brief questionnaire. (see
Appendix 4). This increased the number of referrals enabling a sufficient number of
assessments to be completed within the year. In total, 107 care homes were
contacted about the Toolkit Assessment. Thirty-three care homes had an initial visit
and twenty-one care homes referred in for an assessment, (see Appendix 5).
Dementia Diagnosis Toolkit Assessments 2.3
After a resident had given verbal consent to their care home manager for a Toolkit
Assessment, the GP Practice was contacted. This was an opportunity to ensure that
the GP had up to date information about the project and also to request relevant
information on the resident’s past medical history, present prescription and last
known blood test results.
Some residents had a previous or existing diagnosis of dementia which was not
known to the care home and the project ensured this information was shared.
For those residents needing a Toolkit Assessment a date and time was arranged to
fit with their timetable, their family (if available) and the care home requirements.
Immediately prior to an assessment a Toolkit Consent Form was completed with the
resident.
During the assessment it was also important to find out about the resident in terms of
their preferences, their level of understanding, previous hobbies and lifestyle. This
information was used to inform the personalisation information within the care plan
for ongoing use by the care home (see Appendix 9).
All Care Homes were offered post assessment support, see Section 5.
Data Collection 2.4
Each referral, its’ source, the care home and GP surgery involved was recorded,
together with date of assessment (if performed), and its outcome. The time taken for
each of the four Toolkit sections was recorded.
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At the end of an assessment a satisfaction questionnaire was given to all involved
including residents, care homes managers and GPs (See Appendices 6, 7 and 8).
3 Resources
One whole time equivalent Band 7 clinical to administer the Toolkit Assessment over
a twelve month period.
No additional resources were needed.
4 Results
Engagement with Care Homes/Telephone Questionnaire 4.1
In the first half of the project, 04/16 to 09/16, there were twenty-one referrals made
from nine care homes. The Telephone Questionnaire (see Appendix 4) was
developed as a tool to increase engagement.
The questionnaire was based on 4 questions designed to be completed quickly
either over the phone or by email. The questionnaire clearly indicated those care
homes whose residents did not need the Toolkit Assessment at this time. Those who
indicated that some residents may benefit from an assessment were contacted to
give further information on the project. As a consequence, in the following six
months, the number of referrals rose by a further thirty-three from twelve care
homes.
An indication of residents who could benefit from an assessment did not necessarily
lead to referrals as this was dependent on the care home staff perceiving the
potential benefits of assessment and diagnosis. One care home responded that they
did not have any residents with dementia and that their residents were simply
“pleasantly confused”. Another care home reported that although they had residents
who they thought could have a dementia, “they were no problem to the staff”.
Had the questionnaire been part of an established service rather than a pilot project,
it may have been more successful in translating potential numbers into offering
actual assessments.
Data Collection 4.2
The core of the Toolkit is two standardised memory assessments and three sections to support the assessor to clarify background information. These work together to deliver a comprehensive decision making process and lead to clear outcomes. A copy of the Toolkit Assessment can be downloaded at:
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http://www.wessexscn.nhs.uk/network-structures/mental-health-dementia-neurological-conditions/projects/improving-dementia-diagnosis-and-quality-care-throughout-pathway/
Referral Information: 4.2.1
During Phase 2 there were fifty-four referrals for a Toolkit Assessment from twenty-
one care homes across four CCG areas. The number of referrals for a single care
home ranged from 1 to 7 individuals.
Of the total, 4 referrals came directly from a GP and 50 from care home managers,
indicating the importance of a dementia diagnosis for a care home in terms of
ongoing care provision, and potentially highlighting the most effective referral route
for future work.
By way of example, one GP practice had taken some time to collate the background
information and when one of their GPs was visiting another resident the GP asked if
the Toolkit Assessment was important. The care home manager’s reply was, “it is
important to us”.
Residential or Nursing Home: 4.2.2
At the commencement of Phase 2 it was expected that most referrals would come
from the residential home sector, as it was assumed that most residents in a nursing
home were either admitted with a diagnosis of dementia or were assessed for
dementia shortly after arrival.
The data below shows the final breakdown of referrals and outcomes between the
types of home.
Breakdown of referrals
Type Number of
homes
making a
referral
Number of homes with residents
with existing dementia diagnosis
unknown to home. (some homes
referred in one resident and others made
multiple referrals)
Number of homes
which had
assessments
Nursing home 11 4 (Number of residents: 5) 8
Residential home 10 3 (Number of residents: 8) 9
Assessment outcomes
Type Number of
assessments
undertaken
Diagnosed
with dementia
by the GP
Referred on to a
specialist team
GP to
follow up
Not
dementia
Nursing home 17 8 5 3 0
Residential home 20 7 11 0 2
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There was no difference in the proportion of people diagnosed with dementia by the
GP compared to the numbers referred to specialist team assessment, across
settings. (Chi-square: 1.5506, p=0.2, not significant). One nursing home resident
died prior to the GP post assessment input.
Dementia Diagnosis Toolkit Assessment Information 4.3
The time taken to complete a Toolkit Assessment by a specialist memory nurse
ranged from 33 to 100 minutes, with the average time being 49 minutes. In contrast,
the time required of a GP to review the presented information and feel supported to
make a clinical decision was on average 9 minutes. This indicates that within a short
space of time a GP can make clear clinical decisions regarding their patient from the
information within the Toolkit.
Toolkit Outcomes 4.3.1
Fifty of the referrals came via a care home manager. The majority were appropriate,
indicating that managers are very good at identifying those in their care experiencing
memory difficulties who need a dementia assessment.
Of particular note, 13 residents had an existing diagnosis that the care home did not
have recorded. Diagnosis information is useful to the care homes both in terms of
the content of the care plan and assisting with the quality of the care plan. An
understanding of resident care requirements is also important for the manager to
ensure that all staff are trained appropriately.
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Thirty-seven assessments were completed. For 15 of these residents, the GP had
sufficient information to feel able to make an appropriate and clear diagnosis of
dementia. In total 16 residents were referred on to their local specialist team for
further investigation as to the cause of their symptoms, or consideration of treatment.
In these cases the GP referral letters as seen by the specialist memory nurse that
included the toolkit post assessment information were more informative both in
quantity and quality.
In total, 35 assessments (64% of the total referrals) led to a potential new dementia
diagnosis, nearly half of whom were diagnosed in primary care.
Satisfaction Questionnaires 4.3.2
Three questionnaires were completed by residents, care home staff and GPs, with
responses obtained from all three groups.
The resident questionnaire was completed on 13 occasions, 8 by residents and 5 by a family member or friend. In total 6 care homes responded following 15 assessments (representing all four of the CCG areas) in which assessments were completed. One GP responded.
100% of residents thought it was helpful to have had the appointment
100% of care homes felt that they could manage residents with dementia better/they
are more able to identify a possible dementia and more likely to refer for assessment
in the future.
The GP response was positive about their use of the toolkit process but was clear
that it would be too time consuming for a GP to administer.
Details of these questionnaires and the responses can be seen in Appendices 6, 7
and 8.
5 Post Diagnostic Care Outcomes
The second aspect of the project was to understand the impact of a diagnosis on
post diagnostic care and how this could be improved. Following each assessment a
letter was sent to the GP and care home outlining the diagnosis outcome and
opportunities to personalise the care plan. Examples of these suggestions are in
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Appendix 9. This is not an exhaustive list but shows a range of examples all of which
can be easily incorporated into a care plan.
We were able to suggest improvements to care plans in 94% of cases. For a more detailed range of these options please see Appendix 9.
6 Benefits
At the outset of Phase 2 we aimed to show six discrete benefits.
Increased rates of assessment to improve diagnosis decision making: in Phase
1 there were 8 assessments completed and within Phase 2 there were 54 referrals
with 37 assessments completed for those individuals where dementia diagnosis was
not already available.
High level of GP sign off that assessment was sufficient to allow them to make
a dementia diagnosis from the information provided: nearly half the diagnoses
(15/37 assessments) were made by GPs based on the information they received
from the Toolkit Assessment, with a further 3 diagnosis reviews planned after an
interval.
Increased rates of diagnosis in the Care Home population: of the total referrals,
31 individuals were diagnosed with dementia by the GP/specialist memory nurse,
and a further 13 had a prior diagnosis communicated to the care home for the first
time. An additional 3 individuals are likely to have dementia, and are awaiting GP
reassessment after an interval to confirm the diagnosis.
Reduced inequity of access to specialist dementia care: sixteen residents were
referred on to their local specialist team for appropriate diagnostic workup or
commencement of medication.
Improved understanding of care needs and improved person centric care
planning: all residents had personalised information as arising from their
assessment and this was shared with their care home as an enhancement to their
present Care Plan. 60% of care homes, who responded, indicated this information
was incorporated into the care plan or was in process of being added.
Improved staff understanding and development for those caring for someone
with dementia: feedback from the care homes indicated that they are organising for
more training so that staff have an increased understanding of how to look after
someone with a cognitive impairment. Responses to the care home satisfaction
questionnaire show that all of these care homes identified that they now feel they
can manage residents with dementia better, they will find it easier to identify
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residents with possible dementia thus making it more likely they will refer for
assessment in the future.
7 Achievement of Key Objectives
The table below shows a summary of the key objectives outlined at the start of the project and the extent to which they were delivered.
Objectives Achieved Not achieved
Test the diagnosis toolkit to
provide proof of concept
across a wider audience
The Toolkit has been successfully
utilised in four Clinical
Commissioning Group areas
across Wessex; West Hampshire,
North Hampshire, North East
Hampshire and Southampton
City.
Propose iterative
developments to the Toolkit
to ensure it is fit for purpose
The document proved fit for
purpose during Phase 2.
Develop a sustainable
model for integration of the
toolkit into non-traditional
workforces
To fully develop the Toolkit into
non-traditional workforces, will
require a supportive training
module and further evaluation.
Work with care givers post
diagnosis to inform patient
centred care planning
All residents who engaged with
the project had personalised
information and suggestions
given to their Care Home staff
and staff who accompanied their
resident during the assessment
were supported to learn more
about the process.
Develop an IT solution,
working across Wessex
platforms, to facilitate
reduced data input and
information sharing
Due to the complexities of finding
a shared platform that could be
accessed across Wessex and the
prohibitive cost of this initiative,
plans for the Toolkit assessment
to be accessible using IT were
not progressed.
Analyse post diagnosis
care improvements across
Wessex and develop
sustainable models for post
diagnostic treatment and
support
Post diagnostic care
improvements were achieved and
shared with the Care Homes for
all Residents involved.
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8 Risks and issues
Personalisation Information:
To improve the quality of life for a Resident requires the care home to know who they
are looking after. The Toolkit Assessment does not have within it a specific section
on how to gather personal information about the resident as it is a process held
within the interview. Learning these skills is possible but does require a good
understanding of how someone with a dementia presents.
Nursing Homes:
At the commencement of Phase 2 it was suggested in steering group discussions
that nursing homes would not need to refer in for a Toolkit Assessment as most/all
nursing home residents have a diagnosis of dementia prior to arrival or are assessed
shortly after their arrival. However, nearly half the Toolkit Assessments were
completed in a nursing home indicating the importance of the inclusion of all types of
care homes in Phase 2.
Funding in Care Homes:
Concern was expressed at steering group meetings that a resident could, after
receiving a diagnosis of dementia be asked to move to another care home or be
asked to pay more to stay.
There is no evidence that anyone given a diagnosis from a Toolkit Assessment has
been asked to move. On the contrary, care homes have welcomed having the clarity
a diagnosis gives and a number of care home managers expressed that having as
much clarification as possible on the type of dementia diagnoses was best. Equally,
there has been no evidence that receiving a diagnosis has led anyone to be asked to
pay more as the diagnosis does not alter the level of function for that individual.
Impact on the system:
Reasons for a Specialist Referral:
Further
assessment/investigations
regarding type of
dementia or other
presenting symptoms
GP not able to
make a
diagnosis
Level of
cognition at mild
to moderate level
Possible
medication trial
8 3 2 3
Sixteen residents were referred on to their local specialist team which could be seen
as putting more pressure on a system that many see as somewhat overloaded. In
the short term these referrals may cause some impact however it was agreed at a
steering group meeting that access to appropriate services should not be restricted
17
for sectors of our populations. GPs were encouraged to use the Toolkit Assessment
information as the basis for their referral as a means of sharing quality information.
Residents referred on usually needed more specialist assessment or were
considering trialling a memory medication. The outcomes from both these scenarios
include an initial increase in demand with a potential medium to long term reduction
in crisis and the provision of improved quality post diagnostic care.
9 Lessons learnt
Innovators:
Phase 2 of the Toolkit Assessment asked care home managers to adopt a change in
the way a resident was assessed and potentially diagnosed.
Finding the innovators as quickly as possible was key to the success of this project.
Engagement with care home managers was made clearer from a blog: “A care home
manager’s take on research” written by Robin Willmott in 2015. In this blog he spoke
of the time pressures on care home managers which prevent them being able to
offer the time and support to an initiative regardless of how useful the initiative might
sound.
Creation and use of the Telephone Questionnaire was invaluable in enabling brief
but meaningful contact to be made to a care home manager and more information
was only shared with those who had residents they thought could benefit from an
assessment.
In the same spirit, it was very important to ensure that care home managers
understood how little was expected of them in the Toolkit Assessment process e.g.
knowing who to approach and request verbal consent from, prior to referring for an
assessment. Some care home managers wanted more involvement than this but for
those who were unable to; the Toolkit Assessment was still available.
GPs:
GPs suggesting that care homes be contacted direct was not a surprise, as we know
they are busy professionals. However, their inclusion in the outcomes process was
critical.
The best way of enabling their participation post assessment, was to contact their
surgery and arrange a GP telephone appointment in order to discuss the
assessment. This appointment was made clear in the post assessment GP letter.
The vast majority of contact with GP’s was made this way and worked well.
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10 Conclusion
Phase 2 has shown that the Toolkit is feasible, acceptable and fit for purpose. It achieves a high rate of diagnosis and minimises the time required from GPs to clarify outcomes. The Toolkit can support personalisation of the care plan and supports care home managers to improve care quality.
Next Steps:
We are extending the project (Phase 3) with a focus on maximising the results from
Phase 2. The Toolkit Assessment process will need to spread, develop and be part
of a sustainable programme transferring to CCG partners for ongoing
commissioning.
Offering the Toolkit Assessment via a non-traditional route will require a level of
training to be available. The exact nature of this training will need to be responsive to
the differing needs within CCGs but offer a robust process.
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Appendix 1: Dementia Toolkit Consent Form
20
21
Appendix 2: Map of GP contacts
Contact to the 119 GP Practices in West Hampshire, North Hampshire and Southampton City CCG
Toolkit Presented to a GP Practice
22
Appendix 3: Adapted DeAR-GP
23
24
Appendix 4: Dementia Toolkit Telephone Questionnaire
Dementia Pathway Redesign: Dementia Toolkit Questionnaire
We are interested to know more about the numbers of people in your
Care Home who are diagnosed with a dementia and those who are not.
How many residents are currently living in your Care
Home?
How many residents have a diagnosis of dementia?
How many residents are experiencing memory issues
but do not have a formal diagnosis of dementia?
Would any residents benefit from a memory
assessment?
Yes / No
Name of care home:
If you would like any more information on this project please contact
Thank you for completing this questionnaire.
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Appendix 5: Contacts to Care Homes
Contact made to one hundred and seven
Care Homes across Wessex
Referrals from twenty-one Care Homes
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Appendix 6: Dementia Toolkit Satisfaction Questionnaire (R)
The Resident and Family Satisfaction Questionnaire of which thirteen were
completed; eight by Residents and five by family or friends.
The questionnaire asked:
1. Did you receive an explanation at the beginning of the appointment as to
why you were being assessed?
Yes definitely_ Yes to some extent_ No_
2. Did your appointment help you feel that you could better manage your
condition/situation?
Yes, definitely_ Yes, to some extent_ No, this was not
necessary_
3. Did you have any questions about care and treatment that you wanted to
discuss but did not?
Yes_ No_
If yes, what prevented you?
4. Were any new medications suggested due to the consultation?
Yes_ No_
5. After the appointment were you told what would happen next?
Yes_ No_ Don’t know/can’t remember_
6. Overall, did you feel you were treated with respect and dignity during
the appointment e.g. you felt listened to/there was enough privacy for
you/you were able to ask the questions you felt were important?
Yes, all of the time_ Yes, some of the time_ No_
7. Do you think it was helpful to have this appointment?
Yes, definitely_ Yes, to some extent_ No_, please explain
Any other comments?
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Results: Question 1: Did you receive an
explanation at the beginning of the
appointment as to why you were being
assessed?
Question 2: Did your appointment
help you feel that you could better
manage your condition/situation?
Question 3: Did you have any
questions about care and treatment
that you wanted to discuss but did
not?
Question 4: Were any new
medications suggested due to the
consultation?
Question 5: After the appointment
were you told what would happen
next?
Question 6: Overall, did you feel you
were treated with respect and dignity
during the appointment?
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Question 7: Do you think it was
helpful to have this appointment?
Comments: As a relative present at the meeting I found it most helpful and I am deeply appreciative.
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Appendix 7: Dementia Toolkit Satisfaction Questionnaire (CH)
The Care Home Satisfaction Questionnaire of which six were completed. These results cover fifteen of the residents referred in and represents feedback from all four CCG areas in which assessments were completed.
1. Did you have the project explained to you?
Yes, completely ☐ Yes, to some extent ☐ No ☐ I did not need an
explanation ☐
2. Do you now feel that you can manage residents with dementia better?
Yes, definitely ☐ Yes, to some extent ☐ No ☐
If No, could you please explain why?
3. Do you think you will find it easier to identify residents with possible
dementia making it more likely you will refer residents for assessment in
the future?
Yes, definitely ☐ Yes, to some extent ☐ No ☐
If No, please could you explain why?
4. Have you made changes to residents’ care plans following the
assessments which reflect any new diagnosis?
Yes ☐
Changes required but plans not yet updated ☐
No changes were needed ☐
Any further comments:
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Results:
Question 1: Did you have the project
explained to you?
Question 2: Do you now feel that you
can manage residents with dementia
better?
Question 3: Do you think you will
find it easier to identify residents
with possible dementia making it
more likely you will refer residents
for assessment in the future?
Question 4: Have you made changes to
residents’ care plans following the
assessments which reflect any new
diagnosis?
Comments: It is helpful to be able to have access to a professional to enable us to get a diagnosis confirmed. More dementia training to commence for staff to include “role play.” Excellent outcome for our residents. We are now able and confident to provide the support they require. The assessment was a good learning opportunity both in terms of eliciting information from the resident and the way information was given; often rephrasing.
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Appendix 8: Dementia Toolkit Satisfaction Questionnaire (GP)
GP Satisfaction Questionnaire which was completed by one GP whose responses
are here in blue.
1. Did you feel supported to make dementia diagnoses where appropriate in nursing homes?
Yes No If not, why not?
2. Did you have the opportunity to be as involved as you needed to be?
Yes No If not, why not?
3. Would you now use the Toolkit on your own? Yes No If not, what other support would you need? Too time consuming for a GP. Each assessment took about an hour. Could see the benefit of one or two nurses per home being trained to use it.
4. Do you think the Toolkit has or could enable you as a GP to improve identification of who needs a more specialist assessment?
Yes No If not, what needs to be included?
5. Do you think the Toolkit has improved your ability to target dementia post
diagnostic care?
Yes No If not, why not?
Any other comments? Would hope the specific advice given to homes and residents who have been assessed would be generalised across the home.
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Appendix 9: Examples of personalisation following a
Dementia Toolkit Assessment
The examples are divided up into the different categories as defined by the
Dementia Toolkit Assessments completed and the individuals met with. It is not an
exhaustive list of all the possible personalisation options and they are set out in
alphabetical order.
Activity:
The need for meaningful activity is as important to a resident as anyone else.
Knowing how a resident has enjoyed spending their time prior to living in a care
home can be helpful. One resident was a keen and knowledgeable gardener who
was unable, due to the time of year, to spend time in the garden. Offering indoor
gardening; such as growing plants from seed to then be planted out in the
Spring/Summer; proved beneficial.
Care Home understanding:
How a cognitive impairment affects the presentation of a resident can be very
complex and a number of differing factors can be in the mix. Some residents had,
due to particular organic changes or linked to this and low mood, become self-
isolating. Once a care home was aware of the issues in play they were more able to
offer more personalised input to the resident and reduce stress levels for staff.
Some residents needed more 1:1 attention for a short space of time on a regular
basis to see if contact assisted with any feelings of isolation and others required a
more intensive programme which may need assistance from local resources.
Equally, early morning rising may not be a sign of low mood if this is the timetable
someone has run to during their adult life.
All the care homes involved with the Dementia Toolkit Assessment showed that they
were willing and able to respond to an individual resident’s needs once they
understood what was needed and why and the level and intensity was manageable.
Community family/friend:
Having contact with family or friends is very important for us all and includes anyone
living in a care home. However, under certain circumstances the nature of that
contact can now be via an IT input. One resident who valued seeing close family on
a regular basis was aware of the distance travelled for any visit to occur. Inclement
weather could prevent family visiting or create stress for the resident due to worry
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about their safety whilst travelling. The potential for using internet telephony within
the care home was an option and with support was a viable and acceptable
alternative for the resident and their family.
Community Independence:
Two residents were looking to move back to living independently within the
community after a period of time in the care home setting. For both these people it
was important to offer suggestions regarding the grading of this return in order that
any social skills or reduction in confidence were supported prior to their leaving the
care home.
Examples of this grading included walking out with a member of staff on a regular
basis/joining local community facilities and then using them independently. Ensuring
their level of kitchen skills were confirmed both for their understanding and to assist
with the grading of their package of care via the Local Authority.
Food:
Food is an important aspect of daily life for most of us, not only as a means of having
nutrition and energy but also as a way of expressing our preferences and
individuality.
Some residents talked about how the food they were given was of good quality but
did not necessarily meet with their preferred choices. There are a number of different
ways as to how preferences can met.
One resident had the time to talk about their vegetable garden at home and how the
produce had been used in their everyday cooking. This led on to a list of the foods
the resident did not like which the care home then ensured they would not be served
again.
Alternatively, if someone travelled extensively or had grown up in a family where
spicy foods are commonplace, eating a more traditional British diet may be too
bland. Enabling a resident to access spices they can add to food can stimulate the
palate and encourage intake of calories.
In the more advanced stages of a dementia, enabling someone to eat sufficient
levels of nutrition and remain hydrated can be a real challenge. Advice given to
families and care homes included:
Accessing the information from the Caroline Walker Trust pack and/or The Alzheimer’s Society document on Eating.
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Ensuring any snack has a medley of colour as it is the “fiery” colours that will be seen the clearest by someone with a dementia.
Offering favourite treats in small quantities and more than once a day, for example, one square of chocolate at a time.
Physical Health:
Getting enough exercise can be challenging whilst living in a care home but some
have extensive corridors that could be used to improve a resident’s level of physical
activity. This was suggested for residents who had been keen walkers in their
lifetime as a more circuitous route to the dining room could reflect their previous
motivation for movement as just walking along a corridor would not.
Other suggestions were in relation to the use of small adaptations such as trialling
long handled cutlery as a means of reducing the pain in a resident’s arms.
Sensory Input:
As any cognitive impairment advances the need to offer more sensory stimulation is
a known factor. When it is offered and the manner in which it is offered is not always
so clearly understood. Offering the Dementia Toolkit Assessment within care homes
increased the likelihood of meeting people who had a more advanced cognitive
impairment and sensory advice and suggestions were made for a number of
residents.
These included:
Changing the manner in which someone listened to their favourite music from a radio station to a DVD of a live performance as within their life, attending concerts had been a priority for them.
Requesting that residents have an up to date eye test and hearing examination to ensure these senses were working to their best advantage.
Ensuring residents have the visual stimulation they miss. For example, photographs of pleasant events from their past, including their early years; pictures of locations they knew well and visited often or lived in for many years.
Encouraging staff awareness of the importance of sensory input for a resident as, without it, we can all become bored. This boredom can be expressed in a variety of ways but with access to, for example, pleasant scents/the music that has been important to the resident in their lifetime and/or access to a rummage box, these can reduce feelings of isolation.
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Acknowledgements
Wessex Strategic Clinical Network would like to thank the following for their help, support and assistance during this project:
Care Homes
Abbotts Barton, Winchester. (Colten Care Ltd)
Avondale Lodge Care Home, Southampton (Privately Owned)
Badgers Holt, Southampton (Privately Owned)
Beech Tree, Basingstoke (Select Healthcare)
Bishops Waltham House, Southampton (Hampshire County Council)
Crossways, Hook (SES Care Homes Ltd)
Devereux House, Farnborough (Farnborough and Cove War Memorial Hospital Trust Ltd.)
Freegrove, Lymington (Privately Owned)
Heatherside Care Home, Hook (Pearlcare)
Knellwood, Farnborough (Farnborough (War Memorial) Housing Society Ltd)
Lavender Lodge Care Home, Farnborough (Avery Healthcare Group)
Lawnbrook Care Home, Southampton (Lawnbrook Care Home Ltd)
Manor Place Nursing Home, Aldershot (Jasmine Care Holdings Ltd)
Oakridge House, Basingstoke (Hampshire County Council)
Oak Tree Lodge Care Home, Southampton (Carewise Homes)
Ridgemede Residential Care, Southampton (Ridgemede Care Ltd)
Rowan House, Southampton (Privately Owned)
Sunrise of Bassett (Southampton), Southampton (Sunrise Senior Living)
The Hawthorns Care Centre, Southampton (Lifestyle Care plc)
Willow Court, Andover (Hampshire County Council)
Woodlands Ridge Nursing Home, Southampton (Contemplation Homes Ltd)
GP Surgeries
Adelaide Surgery, Southampton
Alexander House Surgery, Farnborough
Alma Medical Centre, Southampton
Barton Webb Peploe Partnership, Lymington
Bishops Waltham Surgery, Bishops Waltham
Crown Heights Medical Centre, Basingstoke
Forestside Dibden Purlieu Surgery, Southampton
Forestside Marchwood Surgery, Southampton
Friarsgate Surgery, Winchester
Highfield Health, Southampton
Hill Lane Surgery, Southampton
Hook Surgery, Hook
Lyndhurst Surgery, Lyndhurst
Mayfield Medical Centre, Farnborough
Odiham Health Centre, Odiham
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Oakley and Overton Partnership, Overton
Portswood Solent Surgery, Southampton
St Marys, Andover
Southwood Practice, Farnborough
Waterfront and Solent Surgery, Hythe
Waterside Health Centre, Hythe
Wellington Practice, Aldershot
Wistaria Surgery, Lymington
Woolston Lodge Surgery, Southampton
