Portal InstitucionalUFPEL

Background and Rationale
As of May 2021, approximately 434,307 people in England have a diagnosis of dementia. During COVID-19
diagnosis levels dropped by at least 6.3% from March 2020 to February 2021, with 33,500 diagnoses needed to get back to pre-pandemic levels (Alzheimer's Society, 2021). As these individuals present to services, there is likely to be an unprecedented demand, especially as people with undiagnosed dementia often only present to services during a crisis (Department for Health, 2009).
The National Dementia Strategy (Department for Health, 2009) emphasised the need for early and improved rates of diagnosis. The benefits of this for improving access to care are paramount, however, the initial impact of this diagnosis on the individual could be poorly considered. Receiving a diagnosis of dementia has been described as ‘traumatic’ (Bunn et al., 2012, p. 5), and can have a significant, detrimental effect on identity and relationships
(Caddell & Clare, 2010). People with dementia have suggested that, as a result of the diagnosis, they no longer see themselves as ‘normal’ (Bjørkløf et al., 2019). This has been associated with feelings of anger, grief and loss (Fisk et al., 2007), with carers often experiencing anticipatory grief (Garand et al., 2012; Holley & Mast, 2010).
Despite widespread evidence suggesting a diagnosis of dementia is a significant life event and national guidelines confirming the emotional impact of a diagnosis of dementia (National Institute for Health and Care Excellence (NICE), 2018), the provision of post-diagnostic support for emotional wellbeing in NHS memory clinics can be absent, or unequally distributed (Giebel et al., 2021). This was identified as a key research priority by the James Lind
Alliance (Kelly et al., 2015). Further, these unmet care needs are likely to be increasing disease burden for people with dementia who are ‘Left to Cope Alone’ despite an urgent need for ‘emotional support to help them manage the impact of receiving the diagnosis’ in 60% of people with dementia (Alzheimer's Society, 2022, p. 26).
Existing post-diagnostic emotional support in NHS services can include genetic counselling, referrals to Improving Access to Psychological Therapies (IAPT) or use of psychotropic medication. However, all have significant limitations. Genetic counselling is largely limited to those at risk of highly heritable dementias (Patch & Middleton, 2018) and people with dementia make up 0.2% of referrals to IAPT (Alzheimer's Society, 2022), with people with more significant impairment less likely to be treated (Dyer et al., 2018). For psychotropic medication, there is dubious evidence for efficacy in people with dementia despite widespread use (Department of Health, 2019). Taken together, this suggests a gap in care provision.
Outside of clinical practice, post-diagnostic interventions for people living with dementia are often delivered by third sector services and focus on practical interventions around decision making, future care, and facilitating peer support (Alzheimer Scotland, 2022). Research suggests that there is growing evidence that psychosocial therapies for people with dementia are of benefit (Orgeta et al., 2015), but many fail to be scaled up for clinical practice (Luke et al., 2018).
There are currently no standardised post-diagnostic interventions within NHS services that help a person with dementia and their carer process and adapt to a newly given diagnosis. The lack of previous interventions or focus on emotional support for adjusting to a dementia diagnosis and a lack of implementation for psychosocial therapies in dementia represents a significant barrier to the development of a new intervention. Therefore, a programme development grant (PDG) is needed to develop the Programme Theory (Skivington et al., 2021) for a participant-led post-diagnostic intervention that can result in meaningful impact for people living with dementia and their families.
Whilst the use of this intervention will entail cost initially, it may reduce unnecessary prescribing for comorbid depression and anxiety, increase quality of life for people newly diagnosed with dementia and their supportive others, and therefore reduce burden on later NHS service use. Further, it will enable clinicians to circumvent practical barriers in IAPT services.
To develop the programme theory for the post-diagnostic intervention, alternative frameworks than those traditionally used in dementia research are needed. Historically, dementia research has been rooted in loss-deficit models, where the primary focus is on mitigating against loss. However, to develop an intervention that helps people with dementia adjust to their diagnosis, frameworks and focused on cultivating positive emotion and growth such as Positive Psychology (PP) are needed. PP frameworks refer to the scientific study of strengths and capabilities (Seligman et al., 2005), with evidence to suggest that diverse PP interventions are associated with increases in positive affect across clinical populations (Chaves et al., 2017; Grant et al., 2018) and in people processing life changing diagnoses (e.g. Casellas-Grau et al., 2014). A PP approach to dementia is defined as the scientific study of strengths or capabilities that people living with dementia actively use to maintain or enhance their own wellbeing (Stoner et al., 2018a), and empirical evidence suggests that people with dementia actively use character strengths
such as resilience in day-to-day life (Stoner, Orrell, et al., 2017; Stoner et al., 2018a, 2018b; Stoner et al., 2019).
This evidence will be drawn on in the PDG (See Phase 1), with PP interventions therefore ideally suited for
cultivating positive emotions and personal growth in people with dementia.
Systematic reviews and primary research will be conducted to develop the programme theory and understand key implementation issues that are a barrier to the development of this intervention. This PDG will provide the necessary groundwork for a later PGfAR, where the intervention will be developed and evaluated across NHS services. If successful, this PDG and PGfAR will generate meaningful change for people living with dementia, their families and NHS professionals.

Development Work Plan
This work consists of three phases:
1. Phase 1: Using systematic reviews of the literature, we will examine any successful positive psychology
interventions in related areas, and successful psychosocial interventions for people with dementia. This
will allow us to identify best practice in related areas.
2. Phase 2: we will conduct two research studies.
I. Study 1: We will survey people with dementia and carers across the United Kingdom (UK) to
understand their experience of receiving a diagnosis, what support they were offered and what
they require from a new intervention that aims to help them process and adjust to the diagnosis.
II. Study 2: We will interview stakeholders including people involved in policy in the NHS and
government, NHS managers, healthcare professionals, people living with dementia and carers to
understand what may help or stop us implementing an intervention in UK memory clinics. This will
help us develop strategies to ensure that the intervention we develop can be used across the UK.
3. Phase 3: We will establish an advisory board of people with dementias and carers. The board will meet at
regular intervals to advise the researchers, to provide feedback on the results of each phase and help the
research team to answer key questions about the intervention. This will be used to design the intervention, which will then be refined in the first stage of a subsequent Programme Grant for Applied Research
(PGfAR).
Methods
All work will be underpinned by Medical Research Council (MRC) guidelines for developing complex interventions (Skivington et al., 2021) and implementation theory (Damschroder, 2020). A key recommendation differentiating the 2021 guidance from the 2006 iteration is the consideration of implementation from the outset. Thus, this PDG entails a consideration of the following core elements from the updated MRC framework: context, engagement of stakeholders, identification of key uncertainties, and the development of a programme theory.
Exploring the Implementation Context
To understand lived experience of the dementia diagnosis pathway, and to explore the barriers and facilitators to implementing a post-diagnostic intervention in UK NHS settings. Phase 2 consists of two qualitative research studies, which will be submitted for Health Research Authority (HRA) approval, with North East London NHS Foundation Trust (NELFT) as study sponsor and lead site.
Study 1: Understanding experiences of dementia diagnosis and post-diagnosis care pathways.
Design: A national, digital, open-ended survey, and in-person qualitative interviews, to elicit views on the lived experience of receiving a dementia diagnosis, post-diagnostic care pathways and ideals for post-diagnostic support. Data will be collected at one time point. The use of both a national survey and local interviews is warranted to allow for breadth of input from across the UK, and in-depth examinations.
Recruitment: Inclusion criteria are 1) people with dementia who are within one year of having received a diagnosis and who reside in the community, 2) carers who self-identify as a primary carer or supporter for a person living with dementia. People living with dementia in residential or nursing homes will be excluded due to the focus on a community-based intervention. Professional carers who are employed to provide care will be excluded. Recruitment will take place nationally using Join Dementia Research (JDR) and locally at NELFT. Recruitment in JDR will prioritise rural and semi-rural areas, which are underserved by dementia research (Bower et al., 2020). Nationally, a sample size of 50 is required, as survey responses tend to result in less data per question. For in-person interviews at NELFT, a sample size of 30 (15 people with dementia and 15 family carers) is anticipated (Fugard & Potts, 2015). Local recruitment at NELFT will also concentrate on people from ethnic minorities, who can be under-represented in community support following diagnosis (Dodd et al., 2022). Thus, high concentration sampling (National Institute for Health and Care Research, 2018) will be used. Procedure: Participants will be provided with a standardised information sheet and will have an opportunity to discuss the study with a research assistant prior to their participation. For the national survey, participants will be directed to an online survey, hosted on Qualtrics, where they will sign and download a digital consent form. The online survey will consist of demographic questions and open-ended questions to elicit views and experience of receiving a diagnosis and the period following this, and to elicit their views on preferences for the content and format of a post-diagnostic intervention. Questions will include emotional impact, and expectations and experiences of instrumental and psychosocial support.
Qualitative interviews will also take place in-person at NELFT or via the telephone or Teams, and be conducted by a NELFT Research Assistant. Topic guides will be developed iteratively using findings from Phase 1 and with input from the Advisory Board. Materials will be translated to maximise accessibility. As part of debrief information provided to all participants, they will have the opportunity to supply contact information should they wish to be kept updated as to the results of this study. This will be managed in accordance with General Data Protection Regulations (GDPR).
Discussion of post-diagnostic support may result in distress, feelings of guilt, reports of negligent care and
complaints. As such, all participants will be informed of the limits to confidentiality in this setting including disclosure of harm, and professional misconduct. If a disclosure is made, the PI will refer this to the relevant regulatory body.
Analysis: Survey data will be analysed using Structured Tabular Thematic Analysis (ST-TA; Robinson, 2021),
which is a hybrid thematic analysis for brief texts. Interviews at NELFT will be analysed using traditional Thematic Analysis (Braun & Clarke, 2012). Survey data and interviews will be analysed together, resulting in a sample size of 80, which is substantial for a qualitative study. Analysis will focus on identifying shared experiences, both positive and negative of post-diagnostic care pathways in the UK. Further, the analysis will also seek to identify what people with dementia and carers value from a post-diagnostic intervention.
Study 2: Understanding the barriers and facilitators to implementing a post-diagnostic intervention in UK NHS Settings with stakeholders.
Design: A qualitative study to understand the implementation context for the proposed intervention. The
implementation context is UK NHS memory clinics, as they are often the final step in the diagnosis pathway (Dooley et al., 2018).
Recruitment: NELFT Memory Clinics. Participants will include three groups of stakeholders, (Stoner et al., 2020). These are Group 1: policy professionals and decision makers; Group 2: healthcare professionals working in UK memory clinics, and research and development staff; Group 3: people living with dementia and carers who have presented to memory clinic services for the first time within the past year. Inclusion criterion are current membership of one of the aforementioned groups. Between 5 and 10 stakeholders from each group will take part in one semistructured interview (n = 30). Recruitment from each group will be flexible, in recognition that more participants from one particular group may be needed to fully explore implementation issues.
Procedure: Participants will be provided with a standardised information sheet. Interview guides will be adapted from previous research(Damschroder et al., 2009), where they were successfully used to guide the implementation of a psychosocial intervention in diverse healthcare systems (Spector et al., 2019; Stoner et al., 2020). An example of a question posed includes: ‘how are decisions about referrals for post-diagnostic support made?’. The adaptation will involve the Advisory Board, who will also co-develop questions to identify intervention facilitators. Topic guides will also include questions around marginalisation of different groups and explorations of workload and resource allocation/ division. Group 2 participants will also be asked for their interest in being trained in the novel intervention, should the later PGfAR be selected for funding. If they express an interest, they will be asked for permission to store their contact details in accordance with GDPR and NELFT policies.
Analysis: All interviews will be audio-recorded, transcribed verbatim, and analysed using Thematic Analysis (Braun & Clarke, 2012). The analysis will focus on identifying themes associated with barriers to and facilitators of implementing a post-diagnostic intervention in UK Memory Clinics from the perspectives of the three groups of stakeholders.
Establishing an Advisory Group
To identify and recruit a group of experts by experience who will advise the project team on the PDG and later PGfAR.
Recruitment: social media, the Dementia Engagement and Empowerment Network (DEEP) and known contacts of the research team will be approached to source experts by experience, who will be defined as people currently living with dementia and people who identify as a family caregiver. Three men and three women will be appointed, and at least one member of the panel must be from a minority ethnic group.
Future Work Plans (PGfAR)
1. Refine a novel post-diagnostic intervention,
2. Provide evidence for the effectiveness and cost-effectiveness of the intervention and,
3. Implement the post-diagnostic intervention in healthcare settings.

Dissemination and Anticipated Outcomes.
This work will raise awareness of the effect a diagnosis of dementia can have. We will work with our advisory
board to share these results widely, leading to societal impact. Combined with the later programme grant, this
work will result in a meaningful, co-developed intervention for people with dementia and carers that encourages adjustment and increases wellbeing following a diagnosis of dementia.