Dementia post-diagnostic support evaluation: final report

Executive Summary

Summary of background

Scotland’s national dementia strategy, Everyone’s Story^[4], was launched by the Scottish Government and Convention of Scottish Local Authorities (COSLA) in 2023 to address the growing challenges posed by dementia. It aimed to improve the lives of people living with dementia and those who support them. Within the Strategy, one of the key aims was improving the uptake of Scotland’s flagship dementia policy, post diagnostic support (PDS). PDS is a programme of support for people newly diagnosed with dementia to help them understand their condition, plan for the future and stay well for as long as possible. The aim is for everyone newly diagnosed with dementia in Scotland to receive a minimum of 12 months of PDS.

Within the two-year delivery plan^[5] for the Dementia Strategy, Scottish Government committed to commissioning an independent evaluation to understand the impacts of PDS for people across Scotland. This builds on previous evaluations of some elements of PDS. Scottish Government commissioned IFF Research to undertake this evaluation to provide evidence on the effectiveness and impact of PDS and help inform future developments. This is the executive summary from the final report of this evaluation.

Evaluation approach

To carry out this evaluation, we first undertook a scoping phase. As part of this, we reviewed existing documents related to PDS and held a workshop with a group of stakeholders. During this session, we tested and refined a Logic Model and then produced an evaluation framework to provide a robust underpinning to the evaluation^[6][7].

The next stage was qualitative case studies with six Health and Social Care Partnerships (HSCPs) across Scotland. These were chosen to be representative of different approaches to delivering PDS^[8], geographies and communities served across Scotland. Within each case study, interviews were conducted with operational and strategic leads within the HSCPs, frontline PDS practitioners, community and national stakeholders (e.g. third sector), people living with dementia who accessed PDS and their care partners, and people living with dementia who had not accessed PDS. In total, the views of 110 people have been included in the evaluation.

Findings from the qualitative case studies were analysed using a thematic framework approach and considered alongside quantitative data from HSCP monitoring returns^[9] and Public Health Scotland (PHS) data.

Key findings

How PDS was delivered to people living with dementia

PDS was delivered in three main ways: by in-house teams within HSCPs, by a commissioned, external partner (most commonly Alzheimer Scotland) or by a hybrid of the two approaches. Strategic leads within case study areas suggested using an in-house or hybrid model meant they had more control and could be more flexible in how they delivered PDS. Those who used a commissioned model emphasised the benefit of having external experts to deliver the service, especially where they did not have the capacity or knowledge internally.

Across HSCPs, people living with dementia who accessed PDS (now described as services users) most commonly received PDS based on the 5 Pillar Model of support (developed by Alzheimer Scotland). Within this model, service users received support through a named Link Worker^[10] that was structured around five pillars: understanding the illness and managing symptoms; planning for future decision-making; supporting community connections; peer support; and planning for future care.

One ambition of PDS is that service users receive it in a way that is tailored to them and considers their preferences and past experiences. Evidence from the evaluation showed that this was often the case, with service users describing PDS practitioners who listened to what mattered to them. The impact of this for service users was that PDS practitioners offered support that was specific to their wants and needs and enabled them to participate in decisions about their ongoing care. For example, service users described how PDS practitioners spoke to them about what mattered to them and referenced being introduced to local groups that aligned with interests they had shared.

“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

To support PDS delivery, HSCPs reported collecting data and feedback on how PDS is working and highlighted opportunities to share their learning together, such as through quarterly PDS leads meeting and local dementia groups. There were examples of these shared learnings leading to direct actions to improve PDS delivery, for example introducing new data collection methods.

How people living with dementia engaged with PDS

Despite the stated Scottish Government ambition that everyone newly diagnosed with dementia should be offered PDS, only half (50%) of people estimated to be newly diagnosed were referred for PDS in Scotland. This suggests that there is a large proportion of people living with dementia who have not been able to benefit from PDS.

People living with dementia commonly experienced long waiting times between diagnosis and starting PDS (in 2023/24 the average (median) waiting times across all HSCPs in Scotland ranged from 1 day to 448 days^[11]). These long waiting times negatively affected people living with dementia, especially when they were not told why there was a delay in starting support or kept updated about when PDS would begin. When people living with dementia received information or resources whilst they waited for PDS to start, this was viewed positively.

People living with dementia generally thought the way PDS was introduced to them was appropriate. At the first meeting with a PDS practitioner, service users and practitioners typically met face-to-face and each thought this was important to start building the relationship. Service users also preferred when staff led with the practical support PDS can offer (e.g. how to claim financial benefits) as it helped reduce anxiety about their condition.

“If you do get a visit in and get to see them again in their own environment talk about what they want to talk about, it's just all a lot more relaxed and comfortable for them.” – PDS practitioner

It was rare for people living with dementia to decline PDS if they were offered it. Where this did happen, it was often because the person newly diagnosed with dementia did not want to accept their diagnosis. This was particularly an issue within smaller, more rural communities where they feared being judged by people they knew and among minority ethnic communities.

“The biggest one is stigma. The stigma around having dementia…especially in a small community where everybody knows who you are…People don't believe that they have the diagnosis that they've got.”– PDS practitioner

What people living with dementia valued about PDS

Service users reported that PDS improved their understanding of dementia and reduced distress about their diagnosis. Conversations with PDS practitioners and access to peer support were the main ways that these benefits were achieved and service users valued having ‘experts’ (either by training or experience) to turn to.

“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 [help] is around, is good too.” —Service user

Service users also reported that PDS provided reassurances about the future and ultimately increased their confidence in navigating their lives with dementia. This reassurance came from both practicalities (for example when PDS practitioners signposted service users to financial benefits they could receive) and emotions (for example through the peer support networks where they could discuss their symptoms and share their concerns).

However, not all people living with dementia experienced these benefits to the same extent. This included people from minority ethnic communities and those with young onset dementia, learning disabilities, or who lived in rural areas. Staff cultural competency, limited translated resources, lack of tailored community groups and practical issues, such as transport, all played a role in limiting how tailored PDS could be, and therefore how effective it was. These gaps meant that, although PDS was often flexible and responsive to individual needs, it did not fully achieve this for everyone.

“That [support for those with young onset dementia] is a big stumbling block for us a lot of the time in PDS. We tend to get a bit of the backlash of it […] our hands are tied because we don't have the resource to be able to provide these sorts of groups or provision for people.” – PDS practitioner

Resources and staffing available to deliver PDS

The extent to which PDS could be truly tailored to individual service users and delivered in a way that was most effective for them was influenced by resources and staffing. HSCP leads suggested that the amount of funding received and the year-by-year basis on which it was allocated both presented challenges to maintaining adequate staffing levels.

In some HSCPs, challenges with staffing levels led to high caseloads among PDS practitioners. This meant that PDS practitioners could not offer service users as many visits as the service user might want and instead had to stick to rigid schedules of visits (for example, one visit every six weeks). Resource limitations also affected the length of time people could receive PDS for. Although, positively, most people received the minimum 12-months of support, it was rare for anyone to receive more than 12 months of support. Some care partners in particular would have found a longer timeframe of support valuable, particularly as their dementia progressed.

Lack of capacity among other primary, secondary and community services to support those living with dementia also impacted the quality and level of support service users received. In practice, this meant that service users sometimes had to wait a long time to access dedicated support services, such as social care, peer support groups or speech and language therapy. People living in rural communities and those with young onset dementia were particularly impacted by lack of community services.

Recommendations

Recommendations from the evaluation are summarised below. Unless otherwise specified, the recommendations are aimed at all delivery partners, including Scottish Government, HSCPs, Alzheimer’s Scotland and other organisation engaged in the delivery of PDS.

Recommendation 1: Flexibility in PDS delivery

Aim: HSCPs to provide PDS in a flexible way that meets every person’s needs.

HSCPs should build flexibility into how they deliver PDS, so it is truly person-centred. This flexibility should include:

• choosing the PDS start date together with the person living with dementia;
• offering PDS in different formats to meet different needs, such group sessions as well as one-to-one support;
• allowing people to contact their PDS practitioner and have sessions at intervals that are most suitable for them, instead of sticking to fixed appointment schedules;
• providing more than 12 months of support (where possible) when the person living with dementia needs it.

HSCPs should share learning and good practice around flexible approaches to PDS delivery, to enable all HSCPs to put these approaches into practice.

See “Flexibility and tailoring of support” in the main report for the findings that led to this recommendation.

Recommendation 2: Improving waiting times

Aim: Scottish Government to commit resources and planning to address waiting times.

Scottish Government should commit to working with HSCPs to reduce PDS waiting times in the next Dementia Strategy 2-year delivery plan.

In the meantime, while people are waiting for PDS to begin, HSCPs should provide some light-touch interim support where possible. This could include information packs (including content such as what to expect from PDS, information about early symptoms, signposting to any financial support they are entitled to), links to local community support, or a one-off session to help them adjust to their diagnosis.

See “Waiting times for accessing PDS” in the main report for the findings that led to this recommendation.

Recommendation 3: Supporting community groups and services

Aim: HSCPs to strengthen community groups and services as a core part of PDS delivery.

Delivery partners should make sure that their PDS service has direct links to a wide range of community and third sector organisations. These organisations should offer tailored support to a diverse range of service users and provide ongoing help once someone finishes PDS.

HSCPs should consider how they can support these organisations through their health and social care fund. This includes providing financial support to existing organisations and the creation of new ones based on local needs, for example services for care partners, people with young onset dementia, rural residents, people with a learning disability or people from minority ethnic communities.

See “Challenges and Limitations of PDS” in the main report for the findings that led to this recommendation.

Recommendation 4: PDS works for diverse service users

Aim: HSCPs to ensure PDS meets the needs of all service users.

HSCPs should introduce cultural competency training for PDS practitioners (where this is not already available). HSCPs should also strengthen recruitment practices (e.g. offering inclusive‑recruitment training to hiring managers to reduce bias, or advertising roles on platforms that reach minority ethnic communities) to help build a more diverse PDS practitioner workforce.

Delivery partners should work together to adapt existing delivery models or create new ones that meet the needs of people living with dementia who live in care homes or who have learning disabilities.

See “Challenges and Limitations” in the main report for the findings that led to this recommendation.

Recommendation 5: Improving the data available related to PDS

Aim: To robustly evidence the value and impact of PDS.

HSCPs should work with Public Health Scotland (PHS) to develop and share frameworks for monitoring PDS outcomes, that is, the difference PDS makes to people living with dementia, as described in the Logic Model. This collaboration would include HSCPs and PHS working together to determine what information needs to be collected to evidence outcomes and PHS sharing this in their annual reports. This should include monitoring the impact of any actions to reduce waiting times (see Recommendation 2).

See “Outcomes” in the main report for the findings that led to this recommendation.