Contents · Web viewFor each question, participants first had the opportunity to develop ideas on...

Living well with dementiaWorkshop at the North West Dementia

Action Alliance Learning Event: Building dementia friendly communities

Wigan DW Stadium, 26th March, 2015

Summary of Ketso Workshop OutcomesPrepared by Ketso Ltd for the North West Dementia Action Alliance

Contents

Contents................................................................................................................................................1

Introduction...........................................................................................................................................2

Workshop Process.................................................................................................................................3

Key Findings...........................................................................................................................................4

Analysis Process & Presentation........................................................................................................4

Ideas by Broad Category....................................................................................................................5

Support and Health & Social Care Services........................................................................................6

Dementia Friendly Society...............................................................................................................12

Healthy Lifestyle..............................................................................................................................15

Feedback about Ketso.........................................................................................................................16

Summary.............................................................................................................................................17

Appendix 1 – Analysis method............................................................................................................18

Appendix 2 – Further resources..........................................................................................................18

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IntroductionThe North West Dementia Action Alliance hosted a learning event around the North West Dementia Action Alliances and building dementia friendly communities on March 26, 2015. As part of this day-long event, delegates were asked to explore ‘living well with dementia’, in the context of health and social care.

Approximately 115 people attended this workshop, including approximately 30% people living with dementia and their carers, together with people working in dementia care from a range of organisations. The aims of the workshop were to find out participants’ thoughts on what is helpful and unhelpful in supporting people to live well with dementia in health and social care, and to share ideas about what could be done better. The results were to be shared with the Dementia Action Alliance and their partners and the NHS Strategic Clinical Networks for Greater Manchester, Lancashire and South Cumbria.

Ketso, a hands-on toolkit for creative engagement, was used to engage the participants in dialogue and gather their ideas. A Ketso kit provides a set of table-top tools that are used to capture and display people's ideas. Participants write their ideas on colour-coded shapes, and place them on a felt workspace. As participants are guided through a structured sequence of questions, they see the group’s thoughts taking shape, encouraging cooperation, inclusive dialogue and creative thinking.

Figure 1: Participants using Ketso to develop ideas in the workshop

This report presents the ideas that were highlighted as most important by the participants themselves, collated by the Ketso team. The full set of data can be downloaded here: http://ketso.com/examples-case-studies/mental-health-wellbeing#NW-DAA

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http://ketso.com/examples-case-studies/mental-health-wellbeing#NW-DAA

Workshop ProcessParticipants, sitting at tables of five to eight, were asked their thoughts on the following three questions:

What is helpful? What is most helpful in supporting you to live well with dementia? (Or for professionals: What have you observed to be helpful for people to live well with dementia?)

What is unhelpful? What is not helpful in supporting you to live well with dementia? (Or for professionals: what have you observed to be unhelpful in terms of people living well with dementia?)

What could be different? How could we do things differently? (Covering both new ideas and ways to enhance things that already work well)

Figure 2: Leaves used to capture participants' ideasFor each question, participants first had the opportunity to develop ideas on their own (or with their carers). These ideas were then shared with the group at the table and placed on the shared Ketso workspace, forming clusters of similar ideas where appropriate. Ideas were organised around ‘branches’ on the Ketso workspace. The resulting picture of participants’ thinking served to record the ideas, structure the discussion and stimulate more ideas as they went along.

This chart shows the number of ideas to emerge in the workshop, categorised by type.

What could be different?

What is unhelpful?

What is helpful?

0 100 200 300 400 500 600 700

575

490

478

Ideas By Type of Question Asked

Number of ideas

A total of 1545 ideas were recorded in approximately one hour and a half. 90 of these ideas were highlighted as ‘priorities’ by participants

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Key FindingsPlease note that any specific ideas presented in this report do not represent a consensus view of the whole group, but rather the ideas that were highlighted as significant or important by participants (either individually or as a small group)

Analysis Process & Presentation

To present the ideas usefully, they have been grouped into themes and areas through an iterative process by the authors of this report. More details on this process can be found in the appendix. These themes were developed through coding all of the ideas that emerged in the workshop, starting with the one highlighted as significant. This is a systematic, albeit interpretative exercise, giving a practical and indicative way of looking at what has come out of the workshop as a whole.

All of the original data is preserved and available in the form in which it was captured by participants themselves in the accompanying spreadsheet for reference or deeper exploration, alongside the themes developed by the authors. The appendix and spreadsheet can be downloaded from http://ketso.com/examples-case-studies/mental-health-wellbeing#NW-DAA .

The ideas were found to fit well within three broad categories:

ideas about support and health & social-care services ideas about what a dementia friendly society would be like, and ideas about healthy lifestyles for people with dementia and their carers.

Within each of these broad categories, themes and sub themes became apparent in the data. Many of the ideas shared by different participants were very similar or the same, creating natural groups and clear patterns.

This report shows and briefly discusses these results, showing the themes to emerge along with a more detailed presentation of all of the 90 ideas highlighted in the workshop by participants as being important or worthy of further consideration, organised according to the broad categories described above.

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Ideas by Broad Category

Healthy Lifestyle

Dementia Friendly Society

Support and Health & Social Care Services

0 100 200 300 400 500 600 700 800 900

Ideas Shown by Broad Category

1 What is helpful?2 What is unhelpful?3 What could be different?

Number of ideas

More ideas came up in the area of ‘Support and Health & Social Services’ than the other two themes, which was not surprising given the focus of the workshop (people’s chance to talk about Health and Social-Care services). This area had the highest number of ideas around what could be done differently, and very slightly more ideas around ‘what is helpful’ than ‘what is unhelpful’. In the ideas relating to a Dementia Friendly Society, this ratio is reversed, with slightly more ideas around ‘what is unhelpful’. A smaller number of ideas were developed around the broad area of a ‘Healthy Lifestyle’ for people with dementia and their carers, but there was a significant discussion around ‘what is helpful’ in maintaining a Healthy Lifestyle along with some key issues.

Participants’ ideas are presented under each of these broad categories below. For each broad category, charts are shown giving an overview of the themes emerging from analysis of the full set of data. There are briefly discussed and are followed by the ideas that were highlighted as important by participants, grouped under the themes that emerged in the analysis.

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Support and Health & Social Care Services

Three main themes emerged under this broad heading, as shown in the chart below:

Resources & Funding

Kinds Of Support Needed

Desired Qualities Of Support & Services

0 100 200 300 400 500

Support and Health & Social-care Services


Number of ideas

Ideas that were mostly about the way that support and services operate were grouped together under ‘Desired Qualities of Support & Services’. This theme is more about how services are delivered than what services are needed or wanted, and as can be seen in the chart above this was the area that had the most discussion.

Ideas about what support and services are needed were grouped under ‘Kinds of Support Needed’.

Finally in this broad category, there were a number of comments about ‘Resources & Funding’, (as would be expected given the current climate of austerity and discussion about funding of the health and social care services).

Each of these three themes is presented and discussed in more detail below.

Desired Qualities of Support & ServicesMuch of the discussion was around the way that the support and health and social care services operate, as opposed to the actual types of support needed. This has been categorised by identifying the ‘qualities’ that participants wished to see in support and services.

An overview of these qualities, as they emerged in the data, can be seen in the following chart:

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SensitiveAffordable

Diversity AwareIn Person

LocalHolistic

Good Two Way CommunicationHelpful & Understanding

AccessibleActive Roles for People with Dementia

Culturally AppropriateResponsive & Flexible

Age AppropriateGP InvolvementPerson-centred

Consistent & ReliableInformed About Dementia

Early / Timely InterventionsCo-produced with People with Dementia & Carers

Available & SufficientJoined-up Collaboration & Partnership

0 10 20 30 40 50 60 70 80

Desired Qualities of Support & Services

1 What is helpful?

2 What is unhelpful?

3 What could be different?

Number of ideas

A first thing to observe is simply the relative number of ideas associated with each desired quality. The theme with the most recorded ideas in this case was that of ‘Joined-up Collaboration and Partnership’, with by far the highest number of ideas around ‘What could be different’. The next two most discussed, almost evenly in total, were in the area of ‘Co-production of services with people with dementia and their carers’, and the desire for support to be both ‘Available and sufficient’ (meaning good enough quality to meet people’s needs as and when they need it).

A second aspect that may be interesting to note is the relative proportion of each kind of idea—represented by the different colours in the chart—for each of the different desired qualities. The yellow could be loosely interpreted as positive experiences, the grey as negative, and green as ideas for possible ways to improve things. Note that these proportions were found in the data itself, as the participants were asked three different questions using different coloured leaves. They were given roughly the same amount of time for each question, so the different proportions in the different areas give an indication of different responses in these areas. These relative proportions are of course only indicative: any conclusions would need to be backed by further studies. This level of analysis may, however, suggest areas that may be worth looking into in more depth, by giving a flavour of the feelings and perceptions of the workshop participants.

For instance, the need for support to be ‘Available and sufficient’ had a particularly high proportion of ideas around ‘what is unhelpful’, as did ‘Early / timely interventions’. Two noteworthy themes to emerge were: the desire for health and social care staff to be ‘Informed about dementia’ and for

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services and support to be ‘Consistent and reliable’. Both of these themes had a high proportion of discussion overall and of ideas around ‘what is unhelpful’ and ‘what could be different’.

The following table shows the ideas that were highlighted by participants, organised around these themes.

Desired Qualities of Support and Services – Highlighted Ideas

Joined-up Collaboration & Partnership

What could be different? health and social care work TOGETHER

and share funding Joined-up care services Joined up services Main diary / co-ordinator of ALL groups Sharing information to identify those

who may need support Coordination of activities in local area

Active Roles For People with Dementia

What could be different? People with dementia as building

mentors for newly diagnosed i.e. NHS More people with dementia talking at

events

Services Co-produced with People with Dementia & Carers

What is helpful? Having a voice To be listened to

What could be different? Professionals become geographically

"attached" to relevant social groups: trust/ relationships/ efficiencies/ 2-way knowledge

More groups like Liverpool Service User Reference Forum (SURF) & educate all over the country

Empower diverse populations to solve their own problems

more service user involvement in service development

Listening and acting on what people + carers say

Available & Sufficient

What is helpful? Getting support 24/7

What could be different? Services provided after 5pm, support

available 24/7 24-hour help service

Early / timely interventions

What is helpful? Early diagnosis

What could be different? Earlier diagnosis

Consistent & Reliable

What is unhelpful? Quality of care in residential nursing Training for staff in care homes

GP Involvement

What could be different? More involvement from GPs at all

stages, awareness post diagnosis Enlightened G.P.s Educate GPs

Person-centred

What is helpful? Focus on skills, experiences, talents,

abilities

Culturally Appropriate

What could be different? Agree on appropriate assessment

questions for culturally diverse communities

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Kinds of Support NeededThe main areas of discussion pertaining to the kinds of support needed are shown below:

Crisis SupportPreventionResidential

Direct Personal SupportEnd Of Life

For People With Specific NeedsTraining

Ability To Stay At HomePeople To Talk To Who Listen

EmotionalEarly Post-diagnosis Support

Helpful TechnologyRespite Services

Day Centres/activities/places To GoSupport Groups

Carer SupportPractical

Information Provision

0 10 20 30 40 50 60 70 80 90

Kinds of Support Needed

1 What is helpful?l2 What is unhelpful?3 What could be different?

Number of ideas

The theme with the highest number of ideas was ‘Information provision’, followed by the areas of ‘Practical support’, ‘Carer support’, ‘Support groups’ and ‘Day centres / activities / places to go’. Each of these, apart from ‘Information provision’ had roughly the same number of ideas around ‘What could be done differently’.

The following charts show more detail for the two themes with the highest number of ideas associated with them, ‘Information Provision’ and ‘Practical Support’.

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Timely

Format & Presentation

Advice & Guidance

Signposting

Access

0 5 10 15 20 25

Information Provision - breakdown


Number of ideas

In the chart above, the theme of ‘Format and presentation’ captures ideas around making information readable and understandable for people. The need for more, and better, ‘Signposting’ about where to find information emerged as a key theme. The theme ‘Advice and guidance’ is more about the content of the information, with a high proportion of ideas around ‘what is unhelpful’.

Transport

Buddies / Assistance

Direct Monetary Support

Financial & Legal

Planning For Future

0 2 4 6 8 10 12 14 16

Practical Support Needed - breakdown


Number of ideas

Support in ‘Planning for the future’ and with ‘Financial and legal’ issues were discussed a lot, with a high proportion of ideas around ‘what is helpful’ under ‘Financial and legal’ support. There was a high degree of discussion around ‘what could be different’ under the themes of ‘Planning for the future’, ‘Direct monetary support’ (such as carer’s allowances) and ‘Buddies / assistance’.

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The following table shows the ideas in this theme that were highlighted as key by participants under the broad theme of ‘Kinds of Support Needed’.

Kinds Of Support Needed – Highlighted Ideas

Practical support

What is helpful? Money

Support Groups

What is helpful? Social support + networks

Ability To Stay At Home

What is helpful? Being able to stay at home

Carer Support

What is helpful? Support carers in their role Recognising that carers have long-term

health conditions

What could be different? More support for carers Raising status, training & care for carers Paid carers: invest and upgrade training

and pay for carers Carers’ involvement Network up and

running!

Early Post-diagnosis Support

What could be different? When you are 'given' the bad news,

give us a basic guide and how to get support from 'tomorrow' - this should be treated as urgently as cancer - need help straight away

Minimal standard of post diagnostic support for first year at least of diagnosis

SUPPORT + INFO FROM POINT OF DIAGNOSIS

People To Talk To Who Listen

What is helpful? Being able to talk about it

Information Provision

What is helpful? Knowing where to get information and

help Pointed in the right direction lack of

information about local support groups Useful 'Directory of Activities'

What is unhelpful? Irrelevant information overload Lack access to information for carers

What could be different? Consistent and accurate information One Stop Hub for info and support in all

cities One contact number

Day Centres/activities/places

What is helpful? Make good use of libraries

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Finally under the broad theme of ‘Support and Health & Social Care Services’, ideas highlighted by participants under the area of ‘Resources & Funding’ are shown below:

Resources & Funding

What could be different? Ring fence funding for services Seeing the need not the cost Cost benefit analysis

More funding for services Massive increase in funding


Many of the ideas to emerge in the discussion related to aspects of health and wellbeing outside of the Health and Social Care system, and could be seen as aspects of a Dementia Friendly Society (note this does include aspects which are still relevant to, and important for, the Health and Social Care system, notably around how people with dementia wish to be treated and issues of transport, which can affect access to health and social care services). The themes that emerged in this area are shown in the following chart:

Governance & Leadership

Customer service

Dementia Friendly Transport

Employment & Opportunities

New Research & Solutions

Ending Stigma & Discrimination

Social Inclusion & Community

Dementia Friendly Environment

Widespread Understanding

How To Be Treated (by All & Especially Helpers And Professionals)

0 50 100 150 200 250



Number of ideas

As can be seen, the theme with by far the most ideas discussed, and notably the largest number of ideas around ‘what is helpful’, was ‘How to be Treated’. Here participants expressed (both positively and negatively) how it helps to be treated and how it doesn’t help to be treated—by anyone, and particularly by supporters or professionals. The ideas that emerged in this area are shown in more detail in the chart below:

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HonestyClarity

ConsistencyReassurance

HumourValued

Good Two Way CommunicationKindness

Love & CompassionTrust

See The Individual PersonEmpathy

Choice & EmpowermentLet People Go At Their Own Pace

Accepted & IncludedPatience

Respect & DignityUnderstanding

Let Us Speak And Listen

0 5 10 15 20 25 30 35 40

How People with Dementia should be treated - breakdown


Number of ideas

The single most discussed type of idea to emerge in this area was that of allowing people with dementia to speak, and of actually listening to them. As well as having the highest number of ideas, this theme has the highest number of ideas around ‘what is unhelpful’, but still a larger proportion around ‘what is helpful’ (reflecting the number of comments about how helpful it is when people do take the time to let people speak and listen to people with dementia).

The following table shows the ideas highlighted by participants as priorities in the area of how people with dementia should be treated.

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Dementia friendly society – Highlighted Ideas

How to be treated (by all & especially helpers and professionals)

What is helpful? Love us for who we are and help us Treat them as individuals Respect for individuality Individuality Respecting people's dignity - they are

still people! Empathy Being listened to Listening Ask me what I want Patience from others

What is unhelpful? Lack of understanding, talking too fast

Widespread understanding

What is helpful? Raising awareness

What is unhelpful? Poor education

What could be different? Dispel the myths by raising awareness Better public awareness Awareness training Young people / schools dementia aware Training about dementia in schools Education - fixed curriculum subject

Dementia friendly environment

What is unhelpful? Poor customer service + environment of

public areas Busy intense crowded environments

What could be different? The world Dementia friendly accommodation Creating age friendly towns

New research & solutions

What is unhelpful? Not being aware of research

What could be different? A CURE [note that this was highlighted

as a key idea in the feedback and came up as a highlighted idea several times across the groups]

More investment in research to prevent/cure

Social inclusion & community

What is helpful? Inclusion

What could be different? Looking out for each other More social & peer support Inclusive communities

Ending stigma in society

What is helpful? Normal, no stigma

Employment & Opportunities

What could be different? Strong HR policies: -care for dementia, -

continued work programs

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Healthy Lifestyle

The third broad category to emerge was ideas pertaining to healthy lifestyles. The types of ideas that were discussed related to this theme are shown below:

Time With Peers

Self Direction & Determination

Fun & Leisure

Sharing & Self Expression

Importance Of Staying Active

Structured Activities

Advice for People with Dementia

Friends & Family

Importance Of Physical Health

Emotions & States of Mind

0 5 10 15 20 25 30 35

Healthy Lifestyle


Number of ideas

The area with the highest number of leaves was around ‘Emotions & States of Mind’ – perhaps not surprisingly, with only grey leaves denoting ‘unhelpful’ aspects. The ‘Importance of Physical Health’ and ‘Friends and Family’, however, had the next most highest numbers of ideas – almost the same as the area of ‘Emotions’ – with the highest number of ideas around ‘what is helpful’. The category of ‘Advice for people with dementia’ is a collection attitudes and actions that people with dementia have found useful, such as “learning not to hide loss of memory” and “taking risks appropriately”.

The following table shows the ideas in this area highlighted by participants as priorities.

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Healthy lifestyle – Highlighted Ideas

Time with peers

What is helpful? People with dementia meeting other

people with dementia

Importance of staying active

What is helpful? Not dying - keep working & involved

What is unhelpful? Losing skills in daily living

Fun & leisure

What is helpful? People need to enjoy life - living man

Emotions & state of mind

What is unhelpful? Change in the person

Feedback about Ketso35 people responded to an electronic survey about the conference. Of these, all but one answered that they ‘enjoyed the Ketso session’, with the one other response being ‘not sure’. Comments about Ketso included:

“The wrong questions were asked and hence to answers could be given. Typically “living well with dementia”, we don’t live well!! We just live with dementia.”

“It was good. However, personally, being a healthcare professional it was not that useful. However, I have a feeling once I read the review of the Ketso workshop I will find it useful and rewarding to have taken part.”

“Overall a very well organised event with an interesting agenda, well presented. At these types of events it is always good to get something from them, and I think circulating the findings from the Ketso exercise is really good. I can then use these findings to influence commissioners on our Dementia Delivery Board, on which I sit. Thank you!”

“Ketso was very thought provoking.” “Our thanks to the organisers for a great event… Ketso worked well and prompted

discussions but we were keen as a group to ensure there are clear outcomes and action as a result and not just discussions. We look forward to future events. Many thanks.”

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SummaryAs the analysis above shows, there is a lot that is working well in health & social services. In particular, there was a clear message in the feedback at the end of the workshop that there has been a significant shift in including the voice and views of people with dementia and their carers in the design and delivery of support and services. The important role that the Dementia Action Alliances have played in this shift was evidenced in several comments around the need for increased membership of the Alliances and more Alliances overall.

Significant challenges were apparent in the areas of the availability, timeliness and consistency of services, along with experiences of professional staff being ill-informed about dementia. There were, however, also a number of ideas in each of these areas around what is working well, suggesting examples of good practice that can be learned from and shared. There were also clear themes emerging in the areas of the practical support required (in particular ‘Planning for the future’, ‘Financial and legal’, ‘Direct monetary support’ (such as carer’s allowances) and ‘Buddies / assistance’ and the need for more accessible information, with clearer signposting of information, with an emphasis on the value and need of ‘One Stop Hubs for info and support’.

There was a very high proportion of ideas about ‘what could be different’ emerging under two key ‘Desired qualities of support and health & social care services’, namely: ‘Joined-up Collaboration and Partnership’, and the ‘Co-production of services with people with dementia and their carers’, with comments including: the need for more groups like Liverpool Service User Reference Forum (SURF) & educate all over the country”, “empower diverse populations to solve their own problems”, There was a strong emphasis in the discussion on the need for more cultural and diversity awareness.

The important role that social connections play in ‘Healthy lifestyles’ further reinforces the value of support groups and networks, as well as opportunities for “people with dementia meeting other people with dementia”.

There was also a good deal of discussion around issues pertaining to a ‘Dementia Friendly Society’, with a point emphasised in the plenary discussion that finding a cure for dementia is key. A further comment was made to the whole conference that getting older is a gradual stripping of one's identity and the things that one can do, and that creating a dementia friendly society helps people to stay active and keep their identity, further emphasising the importance of a holistic approach that looks at the whole person in the context of their neighbourhoods and communities.

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Appendix 1 – Analysis methodThe ideas from the workshop were analysed in several different ways to develop the broad categories and themes. First, all of the ideas that were highlighted by the participants were reviewed to see what sorts of clusters of ideas could be found. This was then supplemented by a process of grouping all of the leaves that showed ideas of ‘what is helpful’ (yellow leaves) into natural clusters of similar ideas. Once a set of groups was found that covered all of the yellow leaves, the process was repeated until the top level broad categories emerged as containers for all the other groups. Thus all of the ideas around ‘what is helpful’ were found to fall under three very broad categories:

Support & health & social care services Dementia friendly society Healthy lifestyles

Once all of the ideas about ‘what is helpful’ had been coded with this emergent structure, all of the ideas highlighted by participants as priorities were coded against the new structure, with extra categories added from the original pass of creating clusters as required for ideas that did not sit well within any group yet identified. All of the remaining ideas in the data set (1545) were then coded, allowing the themes to be refined from the process of going through the data in detail.

Every effort has been made to place each idea within the most appropriate category or theme. There is a degree of error and subjectivity involved in any such endeavour, but the aim was not to produce a perfectly accurate, ‘correct’ interpretation of how the ideas should be grouped. The aim was to present the data in such a way as to be useful and easily readable, with the understanding that readers can review the main spreadsheet in which the original data has been transcribed without interpretation (apart from having to read the leaves!) if they wish to look in more detail. In addition the leaves can be read alongside the themes as developed by the analyst.

The analysis was carried out by Dr. Joanne Tippett, Fraser How and Dr. Viktoria Wesslowski on behalf

of Ketso Ltd.

Appendix 2 – Further resourcesA second document to go with this document includes a further selection of ideas pulled out from the full data set by the analysts as either noteworthy or actionable ideas. These sections are put in order by the total number of ideas discussed by theme.

This gives more detail of the actual ideas written by participants, in the same structure as this document, without the need to dive into the full spreadsheet with its 1545 ideas to review.

This appendix and the full set of ideas developed in the workshop (in an excel spreadsheet) can be downloaded from:


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