memory matters evaluation _ report

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Evaluation of changes to Home Help as part of Memory Matters

By Debra O Neill, Project Consultant and Researcher, LinkAge Consultancy.

This evaluation report identifies the distinctive features of the community element of the Carlow/Kilkenny Memory Matters project in relation to person centered home help support. It explores the findings and learnings from the project and their influence on sustainability planning.

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Evaluation of changes to Home Help as part of Memory Matters

What has worked really well about the Memory Matters project in relation to changing Home Help services to make them more person-centered?

How have practices and policies changed?

The evaluation workshops were conducted in two sessions in January and April 2016. The workshop participants are listed in Appendix 1.

One to one interviews were also conducted and meetings observed.

This report identifies:

The most significant Observations about the project

What Insight was gained about what worked well and what have we learned?

Reflecting on these insights how has this changed work practices?

What Decisions need to be made to ensure sustainability?

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Content

1. Background to Memory Matters Project

2. Change Map and Outline

3. Evaluation Framing

4. Focus Group Feedback

4.1 Observations and Achievements

4.2 Insights on Design and Delivery

4.3 Reflections on Barriers and Challenges

4.4 Decisions on Actions and Sustainability

5. Vox Pops – What has changed?

6. Summary Learnings, & Next Steps

Appendix & Notes:

1 Evaluation Participants

2 Post Project Care Pathway

3 Post Project Home Help Application Form

Acknowledgements

About the Author

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Content


2. Change Map and Outline

3. Evaluation Framing



4.2 Insights on Design and Delivery



5. Vox Pops – What has changed?

6. Summary Learnings, & Next Steps

Appendix & Notes:

1 Evaluation Participants

2 Post Project Care Pathway

3 Post Project Home Help Application Form

Acknowledgements

About the Author

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6. Conclusions and Learning

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Memory Matters is a two year community based project for Carlow & Kilkenny

which is co-funded by the Health Service Executive, Older Persons Services,

Carlow and Kilkenny and Genio Trust, a philanthropic organisation, which

supports social change and projects in the area of dementia and mental health.

The project, which is an initiative by Kilkenny Age Friendly County Programme,

commenced in mid 2014 and will conclude in Autumn 2016.

The main objective of the research project was to design and test new ways to

support those living with dementia to remain at home in their own communities.

While this may seem straight forward, the scope of the project was ambitious,

stretching across two counties and affecting hundreds of people.

The project incorporated a number of individual initiatives which are both

interlinked and interdependent, including training, telecare and home care

packages. While the HSE designed and tested alternative service delivery models

and reablement programmes under the banner of the programme, the voluntary

and other statutory partners prepared, through training and engagement, to

support a whole system sustainable change. This change project was focused on

repositioning the person at the centre of service delivery while ensuring that all

six elements (Figure 1) of the Memory Matters project were both inclusive and

sustainable.

One of the main activities of the project was providing flexible person centered

support for the individual and their carers and family, through Home Help

Supports, including alternative respite, Home Care Packages and other

multidisciplinary multiagency supports. This element of the project was primarily

led by the Older Person’s Services team at the HSE, supported by other non-

profit service providers.

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Full case studies and additional information about the participants, their families

and the impact the service had on their well being and ability to remain at home

are detailed in the full project report which is due to be published later in 2016.

6 Key Objectives

Provide individual care packages that take account

of carer’s needs.

Provide Dementia Specific Awareness & Training for statutory and voluntary agencies.

Ongoing Media and Publications Campaign.

Support Individuals with complex care needs to

reside at home and have good lives.

Debra O’Neill © 2015 Memory Matters 2015

The potential contribution and personal choice of the person with dementia (and their family or advocate as appropriate) will inform the planning and delivery of individual supports.

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Provide Assistive Technology where

appropriate.

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2. Change Map & Outline

Using the Memory Matters Community Dementia Project as a spring board, HSE

Older Persons Services were able to review how Home Help is accessed and

supports those to remain living at home. This Genio research project was an

opportunity to track changes, discuss alternatives and explore options which

would not have been possible during the normal delivery of services.

The provision of a dedicated resource, mainly the independent project

consultant, ensured that data was collected and analysed consistently and

independently. Processes and assumptions were robustly tested, by designing,

documenting, testing and revisiting. The process was not without it’s

communications challenges as the formative evaluation took place in the lead up

to the project, as well as during the project in order to improve the process

design as it was being implemented. This continual improvement has provided a

more qualitative method of evaluation or enquiry which has delivered evidence-

based feedback and action planning that is designed to keep staff motivated.

Continual Improvement Intervention Model:

Design Process and

Communicate

Test Design and Map

Analysis Feedback & Evaluation

Action Plan Implementation

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3. Evaluation Framework

Using the ORID Evaluation Framework (Objective, Reflective, Interpretive, and

Decisional) coupled with strategic questioning; two Focus Groups were

conducted with key service providers in January and April 2016. A number of

one-to-one interviews were also conducted and a multidisciplinary meeting was

observed in May 2016.

The ORID framework is a specific facilitation tool which enables a focused

conversation with groups of people in order to reach some point of agreement or

clarification in relation to how a project or process has worked. It was developed

by the Institute of Cultural Affairs (ICA) in Canada and involves the facilitator

asking people four levels of questions in relation to their experience of the

process. It's based on the theory that people need access to actual data and

process maps in order to deal with their emotional responses to the process in

order to undertake better analysis, decision making and sustainability as well as

up scaling.

With a project of this size and scope it was also important to establish;

What exact element is being evaluated in this report;

What is the purpose and criteria for the evaluation;

What are the key evaluation questions;

How data will be collected, analysed, and reported.

The “change process” is the part of the project which is being evaluated. This will

explore the changed service for those living with dementia in the community.

The impact of this change on the person’s quality of life and well being is not

being evaluated in this report and will be explored in the overall project review

report which is due for publication in July 2016.

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The purpose of this micro-evaluation is to develop an understanding of the

change process from the service provider’s point of view. In order to better

understand the sustainability of these changes the report will explore what has

worked well and what could have worked better. Through personal reflection the

evaluation explores what real change looks like from a sample of people who

were engaged in the project either through training or through their service

provision.

The evaluation will look to explore and understand the staffing impact on the

programme and also the programmes impact on staffing. The evaluation will also

track useful information for later use by stakeholders in service design.

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One of the main observations identified by the second focus group in April 2016

was the “expanded criteria for accessing home help hours”. The new, more

flexible, Home Help application form enabled Public Health Nurses (PHNs) to

request re-ablement hours and longer periods of support outside the normal 30-

45 min allocated for “personal care”. The criteria were more inclusive and not

purely focused on physical functionality (i.e. Bartel Score). The Home Help

application form was now considered to be more holistic and included those

living with dementia which would previously have been excluded from standard

clinical needs assessment. The Public Health Nurses had observed the “new

process working and were now reviewing care needs in a different way”. This was

possible because they had witnessed a change in process through the project

and were now more inclined to request “non-standard interventions” for their

patients. This was viewed as the ultimate test for the sustainability of the project

although there were some concerns about continued budgets and resources.

The group felt there was a real change in relation to the attitude toward

dementia by health care professionals in general. Elements of the Memory

Matters application form were now included in the standard home help

application form. These important elements included a circle of care prompt,

areas for narrative comments about carer’s wellbeing and other non-medical

information which were invaluable when understanding the social community

connect and support alternatives.

This group also observed that Home Helps had a real “in-depth knowledge” and

understanding of the very personal likes and needs of their clients. They had

developed relationships and had a practical understanding of personal

preferences including the ability to notice subtle changes in behaviours and

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abilities. This was also confirmed by the Home Help focus group themselves in

January 2016. This was an invaluable support to PHN’s and other disciplines

when reviewing services.

Home Helps reported in their focus group that they;

“Often found the activities prescribed by the reablement care plan were too

specific for the project participants”

Home Helps said it was the ordinary everyday activities like watching TV or

walking to the shop for ice cream which were of greatest benefit to the person.

The workshop participants in April 2016 also commented on the nature of the

care plans activities provided by the Occupational Therapists and questioned if

this was indeed the most person-centered way to provide a reablement

assessment, given the advanced stage of the project participants. This

questioning demonstrates a new way of critical thinking in relation to the

“person before the process and the practice”. Further observations were

captured through additional questioning.

4.2 Insights on design and delivery

Exploring the observations the group indicated that the language on the new

Home Help Application Form actually helped to facilitated the change.

Terminology like “sitting service” and “time to task” were no longer commonly

used, and were considered by some to be the opposite of their understanding of

person-centered. However some longer serving senior team members were

observed using such terms at subsequent meetings.

Home Helps themselves felt empowered with the changes, feeling they no longer

needed to “justify” leisure activities like knitting or singing with their client.

There was considerable discussion about the content of the Occupational

Therapist’s care plan and reablement activities being influenced by a family

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member’s recollection of favoured activities and chores. Home Helps indicated

that in their experience previously enjoyed activities were not necessarily an

indication of current preferences.

The group in April explored what additionality was provided by the Occupational

Therapy assessment, considering the wait for the assessment at such an

advanced stage of the illness. This critical insight demonstrates a more flexible

approach to problem solving. The Home Helps reported that it took a number of

weeks to progress activities and a great degree of flexibility from day to day was

needed. It was acknowledged that the expert knowledge acquired by Home

Helps was built up over weeks and months and it was not always possible for

occupational therapists to gain this insight in a few hours during assessment. It

was also acknowledged that because each person experienced dementia in their

own way, each person, each response and each day was different. The degree of

flexibility required made it difficult to manage the process and ensure

“standardised responses”.

Public Health Nurses were also reconfirmed as the person who had clinical over

sight and were best positioned in relation to family, local and personal

knowledge as a result of the process. The Public Health Nurse acted as the

gatekeeper in a positive way and was fully aware of the limitations of the “quick

fix” request for additional home help hours. Public Health Nurses were best

positioned to direct services locally and explore the nature of additional support

hours and what need it filled for the person living with dementia. The role the

Primary Care Team, and in particular its multidisciplinary nature, played in

decision making was also acknowledged. It was also recommended that the

decision making should be made as close as possible to the person living in the

community. This element of the design and delivery was further explored at the

multidisciplinary team meeting in May 2016.

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While exploring the Home Help service delivery the question of quality was also

discussed. This was a difficult area to manage and was very subjective. The

provision of services to those living with dementia could be challenging for some

home helps but like all relationships some people enjoyed each other’s company

more than others. The Home Help coordinators played an important role in this

area “naturally matching” home helps with clients where possible. There was no

evidence of any “mismatch” at the Home Help focus group and all participants

displayed a desire and understanding to improve their knowledge.

Since the conclusion of the Memory Matters project recruitment a new “team

approach” is being tested in relation to Home Help services. Initially the new

model of service was questioned by family in the test area of Callan; however

this now appears to be providing variety and a social element to clients. The

service is now provided by a “Home Help Team” instead of one individual, this

also provides a great support for Home Helps. This is another example of new

processes being tested and explored since the introduction of Memory Matters.

Home Helps themselves acknowledge the invaluable support provided by their

peers in what can be viewed as a “field role”, outside the main structure of the

HSE.

Senior participants at the April focus group felt that the service and contribution

of Home Helps was often undervalued in general in the organisation. This was

viewed as a legacy cultural issue. This sentiment was echoed by the Home Helps

themselves at their session in January 2016.

The inclusion of the Home Care Package Manager at the weekly Carlow

allocation meeting ensured consistency across both counties and this was viewed

as a positive development as a result of Memory Matters. This county

comparison was further evidenced at additional meetings where processes were

challenged.

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On reflection the policy within the HSE of relocating PHN’s based on services

requirements and staff shortages was a challenge, both from a communication

point of view, and also from a patient knowledge point of view. This was

discussed and was a resource issue in general and also identified by the

Occupational Therapy Manager as a growing concern for the OT Department.

The rotation of Occupational Therapists presented a particular communication

challenge at the early stages of the project, which did create a process challenge.

Reflecting back to reablement care plans it was difficult to ascertain to what

extent these plans were influenced by family members, due to the advanced

stage of the project participants. Home Helps indicated that they did not truly

reflect current personal preferences of the person living with dementia. While

this was a challenge for project participants who in the main were unable to

express their own wishes, outside the project this would be an important factor

to consider. The participants at the Home Help focus group reconfirmed this.

The group also indicated that very often family members indicated what the

persons preferred activities were historically. In practice Home Helps found that

it took time and dedication to establish suitable activities and a degree of

flexibility was also needed as the preference changed.

While the inclusion of an Occupational Therapists assessment was acknowledged

as best practice, the additionality of the report and the value it provided in

relation to project participants was debatable, considering the delay it caused in

relation to accessing services. This delay and resource issues were viewed as a

real barrier to continuing this element of the project. At the multidisciplinary

review meeting in May 2016 eighteen months was cited as the waiting time for a

P1 assessment by Occupational Therapists. In a few cases in Carlow a number of

months had passed waiting for an Occupational Therapist assessment report.

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The value of reablement plans was viewed as being of mixed benefits depending

on the person’s stage of dementia. Occupational Therapists viewed this as a

matter of clinical option. What was noted was the time needed to complete OT

Assessments, which sometimes involved a number of visits. While best practice

was always viewed as optimal, the practicality of delivering OT reports on a

standard basis would stretch the service beyond its capacity.

It was noted that weekly Allocations meetings were longer than previous, due to

the level of detailed discussions which took place in relation to clients. This was a

positive result and provided an atmosphere to explore creative and alternative

solutions. However while this outcome was very positive, it did create an added

pressure to busy schedules. Where a consensus was not found, service decisions

could be deferred, pending further investigation, this could result in further

delays.

It was also suggested that the contribution of Home Helps would be an added

advantage at Multidisciplinary Team meetings; however this would not be

possible in all cases, due to resource issues. However in complex cases the

attendance of the client’s Home Help would be very useful. Home Helps also felt

that they should be included in complex case discussions, as they sometimes

visited a home 3-4 times per day and were best positioned to comment on

needs. This was especially the case where there was no family available locally to

advocate for the person.

The group also acknowledged the challenges providing transport in rural areas in

relation to day care. The stigma that was attached to Day Care by many older

people themselves was also explored as a barrier to service delivery. While the

preferred and most economic option for HSE health care professional was day

care, which ensured access to social activities, good meals and company, the

group recognised the individual’s right to decline Day Centre service.

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This social perception of Day Care was explored and the group felt that in general

few day centres provided creative “club style” settings, which were attractive

and inviting for older people. The group advised older people themselves felt day

centres were the “last resort”, akin to “psychiatric day wards” and they were

neither inspired nor encouraged to attend.


A new proposed “check list” will be introduced to support earlier intervention

especially in the area of community supports like Day Care and Meals on Wheels.

This will complement and act as a precursor to the formal Home Help application

submission for Public Health Nurses. This is currently being finalised by the

Assistant Director of Public Health Nursing for introduction.

The role of the Public Health Nurse as “case expert” needs to be reinforced. The

Public Health Nurse is the person who formally requisitions services and as such

all reports, OT assessments and any other supplementary information must be

returned to the Public Health Nurse for presentation to the weekly Allocations

Meeting. The OT assessment should not be submitted directly to the Allocations

Meeting. This will enable the Public Health Nurse to review and explore

occupational therapists recommendations. The Public Health Nurse has a more

holistic view of local services including other community support services which

may support reablement.

To support the number of Public Health Nurses on extended leave, a back to

work interview will be conducted to update on new services and also brief

returning Public Health Nurses about changes in their area. Community

Registered Nurses should also be provided with this type of induction process.

This is will be explored also.

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Clarification is needed in relation to specific hours being requested following

occupational therapist assessment. While the groups acknowledged the

importance of the carer’s wellbeing, it is not always possible to service “very

specific” requests at peak times i.e. Knitting from 9-11a.m. Both focus groups felt

that the activities could be more effectively delivered without a specific time slot

request.

Exploring these types of requests with Occupational Therapists (OT) they did in

fact confirm that the time of day could be a critical element to the reablement

delivery, dependent on energy levels, medication and other factors.

It was discussed that in future the OT will be requested to liaise with Public

Health Nurse in this regard and the assessments provided should not specific day

and duration of service, unless discussed with Public Health Nurse.

Communication is key in this area and while it worked very well in some areas

where office spaces were shared, in some areas communication was poor, across

disciplines.

Moving forward both groups felt the inclusion of client’s Home Help at complex

case planning meetings would be very beneficial. Understanding the role of

Home Helps and valuing their daily engagement could be better acknowledged

by the HSE in general. This is an ongoing cultural development challenge.

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6. “Vox Pops” – What has changed?

6. Conclusions and Learnings

The focus groups and subsequent team meetings provided very useful insights

into what had worked well and what remained a challenge for the post Memory

Matter changed community care pathway. The overarching challenge was

communication across disciplines, this sometimes still lead to misunderstanding

about eligibility for services, and where lines of responsibilities were draw in

relation to accessing services for client.

In a multidisciplinary team meeting on 9th May 2016 it was recognised that the

decision making process was more effective and efficient for everyone including

the client when made as close to the client as possible.

“I am much more aware of carer’s stress”,

Assistant Director of Public Health Nursing

“I feel I have more empathy with family

members now when I’m on the phone”.

Home Help Coordinator

“In the future I feel we should include Home Help’s in complex care planning

meetings especially for those living with dementia”

Assistant Director of Public Health Nursing

“I’m much more aware of pain now which I understand can be undiagnosed, I’m changing the

way I approach my assessment”.

Occupational Therapist “I understand now how important team

work is, especially including family” Home Help

5.

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This would ensure that local knowledge and a more holistic view of services

needed was taken. There was also some discussion in relation to the role of

primary care teams and the involvement of GP in the decision making discussion.

While the ideal situation would involve a client GP this was not always possible.

Some primary care teams were “over medicalised”, were doctors outnumbering

other care professionals at meetings.

The group indicated that the “capturing of a baseline” was needed to map

existing services; this was seen as a critical element of monitoring changes. This

would ensure that all team members truly understand the service in practice and

their role. It was also the only way to review process and progress. This had been

a very beneficial element of the Memory Matters project.

This mapping exercise has also been used in May 2016 to track and evaluate the

Telecare element of the Memory Matters project as it is mainstreamed into

services being provided by the Occupational Therapists post Memory Matters.

Earlier intervention was also identified as a critical component in order for

services to provide a more person-centered service. The Memory Matters

project participations were at an advanced stage of their illness and the

expectations of the project were not always deliverable. To this end an

assessment by an Occupational Therapist at the Memory Clinic and/or Primary

Care level would ensure long term maximization of services. This earlier

intervention of the occupational therapy services would provide real

additionality to services in the future. When the application for additional home

help hours is made, this is too late for occupational therapy support in many

cases.

The service which was previously more reactive has changed and is now more

responsive. Group participants felt they had a greater understanding and

empathy with families when communicating with them in relation to services.

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Both group participants felt there were a genuine move towards and

understanding of promoting and valuing independence at all levels. This

extended to independence of choice in services and was not simple restricted to

independent living.

Some Occupational Therapists also expressed the view that it was carer’s stress

which necessitates additional block hours of care, which would not necessarily

benefit the client’s reablement due to the stage of their illness or capacity.

Occupational Therapists also expressed the view that activities of daily living

were in fact meaningful activities especially for those living with dementia

Information and education is an important element of any change. Reviewing

and reinforcing is critical. Leading by example can continue to endorse real

change which is a long term investment by everyone concerned. The group felt

that language, attitudes and societal changes are supportive of the cultural

change which is current well advanced in the Health Service Executive in Carlow

and Kilkenny.

Communication was good but was sometimes dependent on relationships and

geographical locations of teams. This could be improved across all areas of

operation.

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Appendix 1 Focus Group Participants

Venue

Kilkenny Age Friendly County Office 16th January 2016 2-5pm

Kilkenny Age Friendly County Office 26th April 2016 10-1pm

Consultation Room, HSE Community Services, James Green

Kilkenny, 9th May 2016.

Facilitator Debra O Neill, Project Consultant, Memory Matters

Mary Ahern Home Help Coordinator Jackie Bradley Home Help Coordinator Paula Brophy Home Care package Manager Kathleen Bulman Home Help Coordinator Hazel Byrne HSE Home Help Siobhan Coady Home Help Coordinator Katherine Connolly Home Help Coordinator Majella Cunningham Assist. Director Public Health Nursing Theresa Griffin Assist. Director Public Health Nursing Mary Israel HSE Home Help Teresa Kinsella HSE Home Help Rita Langton HSE Home Help Bernadette Lawrence HSE Home Help Patricia McEvoy Manager Older Person's Services Michelle Murphy HSE Home Help Marie O Sullivan HSE Home Help Sandra Watkins HSE Home Help Tracey Woods HSE Home Help

New Service Delivery Model Home Help Services Application

Step 1 Public Health Nurse identifies

service need

Request Multi-disciplinary assessment as necessary

(via GP and other)

• Memory Clinic • Geriatric Clinic • POLL Referral • SAL Referral • Physiotherapy Referral

Step 3 Completed Home Help Service Application forwarded to OT by

PHN requesting assessment.

Step 5 Home Help Allocations Meeting

Consider all information and assign services if approved.

Troubleshooting 1. What is working? 2. What is not working? 3. What can you/others do?

Can the concern been resolved?

Step 4a URGENT CASE Home Help Application Form submitted to Allocations meeting for consideration for

urgent services. When OT report returned to PHN outlining

functional difficulties and care plan the PHN makes further request for services if

required.

Is care plan providing expected results?

NO YES

Step 2 Complete Home Help Application PHN completes Home Help Service

Application form

Step 4b NON URGENT CASE OT Assessment Conducted

Home Help Application form submitted to Allocations meeting by PHN with OT report

which outlines the functional difficulties and plan of care.

Step 6 Public Health Nurse continues to review care

plan and service.

Version 7/16th October 2015

Appendix 2: Post Project Care Pathway

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Appendix 2: New Home Help Application Form (April 2016)

Home Assessed for

the first time.

Carers difficulties also documented

on application, since Memory

Matters

Including all formal support

provides a clearer picture of unmet

needs

Appendix 3:

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Change in pattern of behaviour

noted and for the first time

Responsive Behaviours.

Circle of Social Care prompts now part of Home Help Application

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Medical Condition Criteria has

changed and also been renamed on

this form.

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Acknowledgements

Special thanks are due to all those who have participated in the focus groups

and especially to Patricia McEvoy who has supported every element of the

Memory Matters project since its launch in 2014. Majella Cunningham,

Assistant Director of Public Health Nursing, has provided advice, direction

and support to the change process, liaising with her colleagues and providing

invaluable feedback as pathways and process were designed, tested and

redesigned.

The Home Help coordinators and Home Care Package Manager have,

without exception, continued to support the essence of the Memory

Matters project throughout its design, testing and implementation stage,

and continue to champion the learning on a daily basis post project.

To the Home Helps who contributed to this evaluation, thank you sincerely,

for your initial advice in our first focus group in October 2014, and for your

continued feedback. Your commitment was invaluable at the early stage of

the project design and your feedback is greatly appreciated.

A big thank you to the Teresa Griffin, Assistant Director of Public Health

Nurses, all the Public Health Nurses, Occupational Therapists, administrative

support staff and also to all those who are involved in the delivery of

services.

About the Author

Debra O’ Neill is an independent consultant and change practitioner who has

provided services to the Memory Matters project since September 2014. In

her capacity as consultant she has acted as animator, facilitator, change

practitioner and researcher. This report is one of a number of reports due to

be published in 2016. (www.linkage.ie)

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memory matters evaluation _ report

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