Dementia post-diagnostic support evaluation: final report

6. Outcomes

The following chapter assesses the extent to which the proposed short-term outcomes, mid-term outcomes and impacts (see Logic Model for full list of these) of PDS in Scotland have been achieved and suggests ways to strengthen future outcomes where these are currently not being met.

Assessing outcomes

We assessed the extent to which outcomes had been achieved on a four-point scale: achieved, partially achieved, not achieved and inconclusive.

• Achieved means that there is consistent evidence across the HSCPs involved as case studies, including across the different audiences engaged, that this outcome is being achieved. Where quantitative data is available in relation to that outcome, this is also consistent with the outcome being achieved.
• Partially achieved means that there is some evidence to demonstrate that this outcome has been achieved, but it is not consistent across the HSCPs case studies, including across the different audiences engaged. Where quantitative data is available in relation to that outcome, this might also not be consistent.
• Not achieved means there is little or no evidence to suggest this outcome has been achieved and this is generally consistent across the HSCPs case studies, including across the audiences engaged and (where relevant) in the quantitative data.
• Inconclusive means that there is not enough evidence available to conclude whether the outcomes has been achieved or not.

Where outcomes differed across specific HSCPs or audiences, this is noted. There were no clear differences in achievement of the outcomes by the mode of PDS delivery. For more information on this approach, please see the Appendix.

Outcomes for service users: short term

There are a range of intended outcomes for people living with dementia who access PDS (referred to throughout this chapter as service users). Table 1 presents the four short-term outcomes related to service users and the extent to which they were achieved.

Table 1: Short-term outcomes for service users and whether they have been achieved

Outcome	Outcome achieved?	Summary outcome conclusion
PDS is person-centred and trauma-informed, based on what people want and need at the time they access it	Partially achieved	PDS is generally person-centred and trauma-informed, but this is not consistent across all service user groups.
People living with dementia and those who support them receive PDS in a way that suits them (regardless of where they live or how old they are)	Partially achieved	Evidence indicated that people generally receive support in a way that suits them, however gaps remained for certain groups of service users.
People living with dementia are supported to engage with PDS	Partially achieved	Most service users felt supported to engage with PDS but delays to starting support and uncertainty about what the support was impacted experiences for some.
PDS practitioners and people living with dementia have an established personal plan	Partially achieved	Although PDS practitioners suggested personal plans were developed for everyone, there was inconsistency in exactly what these looked like and whether service users were aware of them.

PDS is person-centred and trauma-informed, based on what people want and need at the time they access it and

People living with dementia and those who support them receive PDS in a way that suits them (regardless of where the live or how old they are)

There were overlaps in the evidence that related to the two outcomes of whether PDS is person-centred and trauma informed and whether people with dementia and those who support them receive PDS in a way that suits them, therefore the evidence for both outcome is presented together. Both outcomes have been partially achieved.

What is working well

PDS practitioners, service users and HSCP leads all felt that PDS was person-centred and delivered in a way that considers individual needs. Evidence for this included:

• PDS practitioners listened to what mattered to service users and delivered support that reflected this
• PDS practitioners could choose the order in which they covered the five pillars and decide which support services to signpost service users to
• Within some HSCPs, PDS practitioners could also be flexible in how frequently they met service users
• PDS practitioners delivered support that was underpinned by trauma-informed principles and in some cases received dedicated trauma-informed training

“It's all taken into account and it starts with us. She's [PDS practitioner] never said anything like, no we can't do that, we want you to do this. She's never done anything like that. It's always about how do you feel about it? How do you think your dad feels about it?” – Care partner of service user

Areas for improvement

There was some evidence to suggest that the extent to which PDS was person-centred depended on factors including geography and ethnicity:

• Due to high caseloads and having to cover a wide geographic area, within some HSCPs PDS practitioners could only visit service users at set intervals^[38]
• Those from minority ethnic communities, with young onset dementia, with learning disabilities, who lived in care homes and who lived rurally or faced barriers to receiving person-centred care, including:
  • Lack of staff knowledge e.g. around cultural competency
  • Availability of tailored resources and community groups^[39]
  • Inability to access community groups
  • Lack of dedicated PDS offering (i.e. for people living in care homes)

What needs to change

In order to fully achieve these outcomes, support for specific groups of service users’ needs to be improved by:

• ensuring PDS practitioners understand the needs of diverse communities to provide appropriately tailored care;
• ensuring sufficient community groups tailored to those from minority ethnic communities or with young onset dementia;
• improving accessibility of community groups for those who live in isolated, rural communities, for example improving transport links or offering more online support;
• developing appropriate PDS service delivery models for people living with dementia resident in care homes and those with learning disabilities.

People living with dementia are supported to engage with PDS

The outcome of whether people living with dementia are supported to engage with PDS has been partially achieved.

What is working well

Evidence from PDS practitioners, service users and PHS data reflected the idea that people are supported to engage with PDS, in that:

• PHS data showed that there were very low refusal rates for PDS across Scotland, suggesting most people were supported to engage with it
• People living with dementia were typically introduced to PDS at diagnosis with high-level explanations about what the support involves

Areas for improvement

There was evidence to suggest that some people were not being offered PDS and others did not feel supported while they were waiting:

• According to PHS data, in 2022/23 only 50% of people estimated to be newly diagnosed with dementia were referred for PDS
• Service users and PDS practitioners across case study HSCPs described instances where people who were referred for PDS had to wait before it started and during this time were left feeling unclear about when support would start

What needs to change

In order to fully achieve this outcome:

• if there is a wait between diagnosis and starting PDS, people living with dementia should be kept informed about when their PDS is likely to start and be provided with resource to support the, in the meantime;
• further investigation into the estimated proportion of people who are diagnosed with dementia but not referred for PDS should be undertaken to understand why referral is not happening in these instances and how those people can be supported to engage with PDS.

PDS practitioners and people living with dementia have an established personal plan

The outcome of whether people living with dementia have an established personal plan has been partially achieved.

What is working well

Within case study HSCPs, there was evidence from some PDS practitioners that personal plans were put together in line with best practice e.g. they were live documents, put together with service users, that summarised what was important to them and what good care should look like.

Areas for improvement

There was some variation in what the personal plans covered and whether they were widely used.

• Some PDS practitioners described plans that were geared towards staff and simply described the care service users had received
• Not all services users from case study HSCPs were aware they had a personal plan in place
• PDS practitioners questioned whether personal plans were used after PDS ended

What needs to change

In order to fully achieve this outcome:

• HSCPs could consider referring to Healthcare Improvement Scotland’s “Essential 5 Criteria” for putting together a personal plan to ensure these are consistent across all service users.

Outcomes for service users: mid term

Table 2: presents the five mid-term outcomes related to service users and the extent to which they were achieved.

Outcome	Outcome achieved?	Summary outcome conclusion
People living with dementia and those who care for them experience less distress around their diagnosis and experience of the condition.	Partially achieved	PDS was introduced at or before diagnosis and service users described feeling more confident about their condition but PDS typically starts too late to reduce stress around diagnosis.
People living with dementia understand their condition better and feel better prepared for their future.	Achieved	Service users felt PDS supported them to understand their condition and expressed feeling less frightened about the future.
People living with dementia and those that support them maintain engagement with PDS (for a minimum of 12 months).	Partially achieved	Twelve months of support was achieved in the majority of cases, but not every case.
PDS practitioners provide support that is equality-sensitive.	Partially achieved	PDS practitioners were confident they could provide support to everyone, but certain groups of service users did not receive sufficient support.
People living with dementia feel listened to and are enabled to participate in their ongoing care for dementia, alongside care partners.	Achieved	In line with care feeling person-centred, services users generally felt listened to and that they could participate in their care.

People living with dementia and those who care for them experience less distress around their diagnosis and experience of the condition

The outcome of whether people living with dementia and those who care for them experience less distress around their diagnosis and experience of the conditions has been partially achieved.

What is working well

PDS practitioners and service users believed that PDS supported people living with dementia to come to terms with their diagnosis and experience less distress about their condition. Evidence for this included:

• PDS practitioners reported that PDS was introduced at diagnosis, which meant that people living with dementia knew they would receive dedicated support as soon as they were diagnosed
• Services users reported feeling reassured by the offer of PDS, particularly when it was highlighted that they would have one main point of contact and when PDS practitioners used tailored language to describe dementia
• Service users frequently reported that PDS made them feel less distressed and more confident about their condition, since they had an ‘expert’ contact who made them feel less alone

“It helped me cope with [the diagnosis], not cope with it, but understand that I have got it and it's okay to forget things.” – Service user

Areas for improvement

Some service users felt that PDS had been introduced too late to support them with their diagnosis specifically. This was particularly the case in instances where PDS did not start for a number of months.

What needs to change

In order to fully achieve this outcome:

• HSCPs could consider how to provide support around diagnosis if PDS cannot be started immediately, for example signposting to community support or offering a one-off dedicated visit related to adjusting emotionally to diagnosis.

People living with dementia understand their condition better and feel better prepared for their future

The outcome of whether people living with dementia and those who care for them experience less distress around their diagnosis and experience of the conditions has been achieved.

What is working well

Service users and PDS practitioners reported that, due to PDS, service users understood their condition better and felt better prepared for the future. Service users expressed that this understanding and preparedness stemmed from:

• Informative conversations with PDS practitioners, not only about their condition but also around practical matters like future care and end of life planning
• Peer support groups accessed through PDS where they could discuss their symptoms and experiences with other people living with dementia

“I think it's helped me. I don't feel scared anymore. I feel more accepting, I suppose. But knowing there is help there that is around is good too.” —Service user

People living with dementia and those that support them maintain engagement with PDS (for a minimum of 12 months)

The outcome of whether people living with dement maintain engagement with PDS for a minimum of 12 months has been partially achieved.

What is working well

PHS data demonstrated that across Scotland, in 2022/23 the vast majority (over 80%) of service users received a minimum of 12 months of support.

Areas for improvement

According to the PHS Scotland data, in2022/23 just under one in five service users did not receive 12 months of support. There was some evidence to suggest why this was the case:

• Practical reasons i.e. the person living with dementia moved into a care home or passed away
• Instances where individual service users felt like they got what they needed from PDS in a shorter timeframe, so did not want to continue with it (note that in some cases, HSCPs still kept service users on their books in case they did want to get back in touch within the 12 months).

What needs to change

In order to fully achieve this outcome:

• a service delivery model for PDS in care homes should be developed to ensure PDS continues if a person living with dementia moves into a care home.

PDS practitioners provide support that is equality-sensitive

The outcomes of whether PDS practitioners provide support that is equality-sensitive has been partially achieved.

What is working well

Across case study HSCPs, PDS practitioners felt that they could provide PDS to anyone, due to the person-centred nature of support. Examples of varying needs staff felt they could address included:

• Stage of dementia
• Age of service user
• Other health conditions, such as physical disabilities
• Complex care needs

Areas for improvement

Following on from evidence given related to the outcome that people receive PDS in a way that suits them, there were certain groups for whom equality-sensitive support had not been achieved. These included:

• People from minority ethnic communities – some felt like staff could not provide culturally sensitive support
• Adults with learning disabilities – there was not a tailored PDS service available for this group
• Adults living in care homes – there was no evidence that adults living in care homes received PDS

What needs to change

In order to fully achieve this outcome:

• improve or offer staff training focused on culturally-sensitive support;
• create a service delivery model for those with learning disabilities or who live in care homes and ensure PDS practitioners are appropriately trained on this.

People living with dementia feel listened to and are enabled to participate in their ongoing care for dementia, alongside care partners

The outcome of whether people living with dementia feel listened to and enabled to participate in their ongoing care for dementia has been achieved.

What is working well

Service users thought PDS practitioners listened to them and tailored the support offered to their needs and wants. Evidence for this included:

• Service users provided examples of PDS practitioners who went out of their way to find support related to their interests, for example a peer support or community group dedicated to their hobbies
• Service users described that PDS practitioners did not force particular types of support on them if they did not want it, but instead just provided options for them
• Service users and their family members provided examples of when PDS practitioners listened to what service users wanted to talk about and took an active interest in them

Outcomes for service users: impacts

Table 3: Impacts for service users and whether they have been achieved

Outcome	Outcome achieved?	Summary outcome conclusion
People are supported to live well for longer in their communities during and following PDS	Inconclusive	PDS practitioners and strategic leads were confident that PDS encourages independence, but whether this was sustained after PDS had finished was unclear for community stakeholders and service users.
There is equitable access to PDS irrespective of factors such as the person’s age, disability, ethnicity, where they live, and ability to use technology to engage with support	Not achieved	Equitable access to PDS was not achieved for all people living with dementia, particularly those form minority ethnic communities, those with young onset dementia, those with more complex care needs and people who live in rural areas.
PDS is of high quality and of the same standard across regions of Scotland	Partially achieved	PDS is of high quality across HSCPs, but there is some variation in terms of flexibility of delivery and the availability of certain types of support.
People living with dementia experience fewer Accident and Emergency visits, hospital admissions and GP visits	Inconclusive	PDS practitioners and strategic leads provided evidence for how PDS can support this outcome, but there is no clear quantitative evidence to support this.
The human rights of those living with dementia and those supporting them are upheld	Inconclusive	There is not enough evidence to determine whether PDS influences whether the human rights of those living with dementia and those support them are upheld.

People are supported to live well for longer in their communities during and following PDS

The outcome of whether people living with dementia are supported to live well for longer in their communities during and following PDS was inconclusive.

What is working well

PDS practitioners and HSCP leads were confident that people were supported to live well for longer with dementia during PDS due to the independence PDS encourages. Evidence for this included:

• PDS supported people living with dementia to build support networks throughout the community
• Through PDS, people living with dementia can be linked to specific services to support independence, for example someone to support with grocery shopping or personal hygiene

“A lot of them will come to our groups within the centre where I work and it's really nice to see people still having a really good quality of life. If there was no link worker there, if there was no one there at the start to guide people, I think a lot of people wouldn't have the confidence to embrace what they're doing on their own.” – PDS practitioner

Areas for improvement

Community stakeholders were not confident that the benefits service users experienced during PDS were sustained after PDS ends, suggesting that once dementia progresses, the foundations of support built during PDS may not be enough to keep people in the community.

What needs to change

In order to fully achieve this outcome:

• consider collecting quantitative data on how long people on PDS remain in their communities and whether this marks a change from previous levels;
• make sure that individual and community resilience is embedded within PDS to support people to live in their communities for longer after PDS concludes.

There is equitable access to PDS irrespective of factors such as the person’s age, disability, ethnicity, where they live, and ability to use technology to engage with support

The outcome of whether there is equitable access to PDS has not been achieved.

Areas for improvement

As was laid out in the short-term and mid-term outcomes related to equitable access, evidence from across HSCPs and from PDS practitioners, strategic leads and service users suggested that there were inconsistencies when it comes to equitable access to PDS. In order for the outcome of equitable access to PDS to be achieved, these earlier outcomes first need to be addressed.

PDS is of high quality and of the same standard across regions of Scotland

The outcome of whether PDS is of high quality and the same standard across regions of Scotland has been partially achieved.

What is working well

Evidence that pointed towards PDS being of high quality and the same standard across Scotland^[40], included:

• PDS practitioners, strategic leads, service users and PHS data all suggested that PDS was person-centred and delivered for 12 months in a way that suits the individual
• There was widespread use of personal plans across case study HSCPs
• There were some key points of consistency in delivery, for example the 5 Pillar delivery mode was used across HSCPs

Areas for improvement

There were some differences in how PDS was delivered across HSCPs and service users that affected the extent to which it could delivered to the same standard. These differences included:

• There were only a small number of HSCPs that had a specific provision for young onset dementia
• Some HSCPs had more flexibility in terms of how frequently PDS practitioners could visit service users than others, which suggests that some service users were receiving a higher standard of PDS than others
• Support for care partners was more developed in some HSCPs than others, for example in HSCPs which used the 8 Pillar Model of support with a dedicated pillar for support for carers

What needs to change

In order to fully achieve this outcome:

• Scottish Government could consider ring-fencing certain portions of PDS funding for specific services to improve consistency, for example provision for young onset dementia;
• HSCPs that can offer more flexible support should share learnings with HSCPs who cannot to see if they can support improvements in the flexibility of the PDS offering.

People living with dementia experience fewer Accident and Emergency visits, hospital admissions and GP visits

The outcome of whether people living with dementia experience fewer Accident and Emergency (A&E) visits, hospital admissions and GP visits was inconclusive.

What is working well

PDS practitioners and HSCP leads reported that the support PDS offers, coupled with the physical presence of practitioners in service user’s homes, contributed to fewer instances of A&E and hospital admissions and GP visits. Specific examples to illustrate this from PDS practitioners included:

• The pillar of PDS focused on understanding the illness and managing symptoms meant that service users and their care partners could learn to deal with certain situations at home, rather than seeking medical attention from other sources, for example dealing with infections (this was corroborated by services users themselves).
• Referring to other care providers as part of PDS, such as occupational therapy, could help make homes safer, again reducing hospitalisations
• The presence of PDS practitioners in people’s homes on a regular basis meant they could keep a close eye on service users and flag to relevant care providers (e.g. social care) if they noticed a concerning deterioration in the person living with dementia, or make suggestions for how people could make their home safer themselves

What needs to change

Nevertheless, this feedback was based on staff’s assumptions based on their experience rather than empirical data for the impact of PDS on A&E and hospital admissions or GP visits. This data was not available.

In order to fully achieve this outcome:

• collect (or analyse if already exists) data on A&E and hospital admissions and GP visits among people living with dementia accessing PDS to determine if PDS does lead to fewer of these medical interventions.

The human rights of those living with dementia and those supporting them are upheld

The outcome of whether the human rights of those living with dementia and those supporting them are upheld was inconclusive.

What is working well

Some aspects related to the human rights of people living with dementia were exhibited through PDS^[41], including:

• People living with dementia were empowered to participate in their current and future care and received tailored support
• Through PDS, people living with dementia were supported to continue being active members of society

Areas for improvement

There were examples of where the human rights charter had not been fully observed, for example:

• The element of the human rights charter that focuses on equality was not observed across all people living with dementia, with those from minority ethnic communities, with young onset dementia, with learning disabilities or living in rural areas not having equitable access to PDS.
• One case study HSCP had undertaken an Equality and Human Rights Impact Assessment and were not sure if the use of the five-pillar model meant PDS was truly person-centred enough to be considered as upholding human rights

What needs to change

Evidence relating to other aspects of the human rights of people living with dementia was not available, particularly around whether people living with dementia were empowered to know their rights and what accountability to the human rights of people living with dementia exists within PDS.

In order to fully achieve this outcome:

• consider how accountability for upholding human rights of people living with dementia could be built into the information IJBs report on PDS;
• consider how people living with dementia could be empowered to know and claim their rights throughout the PDS process.

Outcomes for PDS practitioners

Table 4: presents the short-term and mid-term outcomes and longer-term impacts of PDS for PDS practitioners.

Outcome	Outcome achieved?	Summary of outcome conclusion
Short-term: PDS practitioners have the necessary skills, resources and attitude to deliver high quality PDS	Partially achieved	PDS practitioners were described as highly engaged and skilled in their roles by colleagues, but there is a gap in terms of being able to support all people living with dementia to the same standard.
Mid-term: PDS practitioners feel confident and supported in their delivery of PDS	Achieved	PDS practitioners felt confident in and proud of their PDS work and were supported by fellow staff.
Impact: Increase in morale among PDS practitioners	Inconclusive	Morale was high among PDS practitioners, but it is unclear whether this is an increase compared to previous levels.
Impact: Lower turnover of PDS delivery staff	Inconclusive	There was no clear evidence for whether turnover of PDS delivery staff had decreased.

PDS practitioners have the necessary skills, resources and attitude to deliver high quality PDS

The outcome of whether PDS practitioners have the necessary skills, resources and attitude to deliver high quality PDS has been partially achieved.

What is working well

PDS practitioners were generally described by colleagues and service users as highly skilled and having the right attitude for the job. Evidence for this included:

• Service users described staff as friendly, supportive and expert
• PDS leads described their PDS practitioners as being highly skilled and experienced
• PDS practitioners generally received sufficient training, either on the job or through formal training

Areas for improvement

Evidence suggested that PDS practitioners were not always able to provide culturally competent support.

What needs to change

In order to fully achieve this outcome:

• PDS practitioners should receive training on how to provide culturally sensitive PDS.

PDS practitioners feel confident and supported in their delivery of PDS

The outcome of whether PDS practitioners feel confident and supported in their delivery of PDS has been achieved.

What is working well

PDS practitioners were confident and proud in their delivery of PDS.

• Despite lack of capacity, staff attitudes were generally positive; they valued the work they did
• Staff reported feeling confident in the difference they could make to people living with dementia
• Feelings of support within PDS teams were also high, with staff mentioning going to each other for advice and support

“They're absolutely fabulous for the patients and the families and they are very caring...So at that meeting we have on a Tuesday, if they want to raise issues about certain patients, then we have an open forum to discuss. They'll bring a wee case study thing and they'll say, I've been visiting Mrs. Smith and this is how I found her the last time I was in and I'm concerned about her…and we'll escalate it so there is that safety net for them … they can go back and discuss that as a team.” – PDS practitioner

Increase in morale among PDS practitioners

The outcome of whether there has been an increase in morale among PDS practitioners was inconclusive.

Morale was generally seen to be high among PDS practitioners, however whether this could be constituted as an increase was not clear.

What needs to change

In order to fully achieve this outcome:

• HSCPs could consider collecting data on the experience of PDS practitioners, for example a job satisfaction survey paired with qualitative interviews, to assess levels of morale quantitatively and note any changes over time.

Lower turnover of PDS delivery staff

The outcome of whether there is a lower turnover of PDS delivery staff was inconclusive.

Some HSCPs did express concern over staff turnover due to salary stagnation and being unable to offer long-term contracts due to short funding cycles, however quantitative data on staff turnover was not available.

What needs to change

In order to fully achieve this outcome:

• HSCPs could collect (or analyse if already available) data on PDS practitioner turnover and note any changes over time.

Outcomes related to sharing learnings

Table 5: presents the short-term and mid-term outcomes and longer-term impacts related to data and information sharing for PDS.

Outcome	Outcome achieved?	Summary of outcome conclusion
Short-term: Learnings (e.g. good local practice, challenges) are shared across sectors e.g. via a network of practitioners across Scotland and quarterly meetings between PDS leads	Achieved	The PDS leads meetings were attended and used to share learnings. There was also evidence of learnings shared through Healthcare Improvement Scotland’s quality improvement framework and HSCP-level strategy groups.
Mid-term: Improvement activity is undertaken to PDS delivery based on shared learnings and monitoring data	Partially achieved	There was evidence of HSCPs using monitoring data and qualitative feedback to make improvements, but there was a perceived gap in terms of data to inform strategic planning.
Mid-term: There are improvements in the level and quality of data collected related to PDS Impact: Commissioning bodies and leadership have access to robust local and national data	Partially achieved	Monitoring return data was submitted and used across HSCPs, however gaps remain in terms of collecting data across PDS outcomes.

Learnings (e.g. good local practice, challenges) are shared across sectors e.g. via a network of practitioners across Scotland and quarterly meetings between PDS leads

The outcome of whether learnings are shared across sectors has been achieved.

What is working well

There was evidence of learnings being shared through a variety of mediums, including:

• Healthcare Improvement Scotland’s (HIS) Quarterly PDS Leads meetings – in 2023, HIS assessed the impact of the quarterly PDS leads meetings through a survey of 21 PDS leads. Out of these 21 leads, 19 thought the network was at least “somewhat important” for helping their organisation to connect with others for improving dementia practice, with 14 suggesting it was “very important”
• Within HSCPs – there were examples of learnings being shared between HSCPs and community groups, for example through joint steer or advocacy groups.

Improvement activity is undertaken to PDS delivery based on shared learnings and monitoring data

The outcome of whether improvement activity is undertaken based on shared learnings and monitoring data is has been partially achieved.

What is working well

There was evidence from the monitoring returns and case study interviews that HSCPs have undertaken improvement activity, based on: the HIS quality improvement framework, referrals, referral outcome and waiting times data and qualitative feedback from service users to adjust services

Specific examples of how this information was used to drive improvement activity included:

• One HSCP was putting together proposals for how to support people while they are on the waiting list for PDS
• One HSCP was inspired by a PDS leads meeting to improve the data they collect on those with learning disabilities who are receiving PDS

Areas for improvement

Despite some HSCPs indicating in the monitoring returns that they used qualitative feedback to assess PDS impacts, there was no evidence of these being mapped to specific outcomes as laid out in the Logic Model.

There were also concerns shared by some HSCP leads that the data they collected limited the improvement activity they could undertake to operational changes. These HSCP leads wanted more data to support them in their strategic planning.

What needs to change

In order to fully achieve this outcome:

• HSCPs/PDS leads network should generate a framework that can be used to collect data on and monitor PDS outcomes. This could support with strategic planning.

There are improvements in the level and quality of data collected related to PDS and Commissioning bodies and leadership have access to robust local and national data

The outcomes of whether there are improvements in the level of and quality of data collected to PDS and if commissioning bodies have access to robust local and national data are considered together. These were both considered to be partially achieved.

What is working well

Evidence from case study HSCP interviews and monitoring returns demonstrated that there was widespread, robust data collection related to PDS, including:

• Operational data
• Qualitative feedback from service users, often through the Single Quality Question
• Use of case studies

What needs to change

In order to fully achieve these outcomes, the earlier recommendation of generating and using a framework for measuring PDS outcomes needs to be addressed.

Outcomes for connections between care providers

Table 6: presents the short-term and mid-term outcomes and longer-term impacts related to connections between different care providers within PDS.

Outcome	Outcome achieved?	Summary of outcome conclusion
Short-term: Communication and collaboration is established between PDS providers and primary care / secondary care / health and social care/ third sector and community organisations	Achieved	PDS is connected to a range of care providers and community organisations.
Mid-term: PDS is connected with primary care, secondary care, health and social care, and third sector / community organisations	Partially achieved	Despite examples of close collaboration between PDS and other care providers and community organisations, not all community organisations felt connected to PDS and there were examples of breakdowns in communication over service user’s care.
Mid-term: Increase in the tools and resources available to support PDS	Partially achieved	Some HSCPs mentioned introducing new technology and there was also evidence that communication between community groups and PDS practitioners led to increased resources, however this was not referenced across all HSCPs.

Communication and collaboration is established between PDS providers and primary care / secondary care / health and social care/ third sector and community organisations

The outcome of whether communication and collaboration are established between PDS provides and primary/secondary care/ health and social care/ third sector has been achieved.

What is working well

PDS practitioners were connected with a range of care providers and there was strong evidence of joined-up care. Evidence for this included:

• Across HSCPs, PDS practitioners and service users referenced a huge variety of other care providers related to their PDS, including occupational therapy, social care, language and speech services, professional carers and community organisations.
• There was evidence of community groups working with each other to share learning, tools and resources related to dementia care, which also supported the joined-up nature of PDS.

PDS is connected with primary care, secondary care, health and social care, and third sector / community organisations

The outcome of whether PDS is connected with primary care, secondary care, health and social care and third sector/community organisations has been partially achieved.

What is working well

There was strong evidence for PDS working well with other care providers. Evidence related to this included:

• Joint PDS and social care visits to service user’s homes
• Other care providers “taking over” PDS delivery for a specific amount of time and for a specific reason, for example to deliver cognitive simulation therapy
• PDS practitioners and social care workers sharing concerns and things to look out for, for specific service users

Areas for improvement

Some community stakeholders and service users shared experiences that suggested connections between care providers were not always strong or smooth. For example:

• Some community stakeholder groups did not feel very connected to PDS and felt like they could be referred into more frequently to support people living with dementia^[42]
• Some service users felt like their care was disrupted when they were moved between internal services within the NHS e.g. between PDS and Older Adult Mental Health

What needs to change

In order to fully achieve this outcome:

• consider increasing referrals from PDS into community support and ensuring that PDS practitioners are aware of all the types of community support on offer;
• ensure clear channels of communication within the NHS when people transition between different teams to ensure no gaps in support.

Increase in the tools and resources available to support PDS

The outcome of whether there has been an increase in the tools and resources available to support PDS has been partially achieved.

What is working well

There were a range of examples HSCPs provided of the tools and resources they used to support PDS delivery. Examples included Playlist for Life, Alexa speakers and online group support.

Areas for improvement

Specific tools and resources were not mentioned in all case study HSCPs and some HSCP leads and PDS practitioners suggested they needed to become more confident with and increase awareness of the different types of technology and support available.

What needs to change

In order to fully achieve this outcome:

• HSCPs should share learnings around new tools and resources they offer to improve the consistent use of technology in the delivery of PDS and ensure it is the same standard across Scotland.