Introduction
A diagnosis of dementia has major implications for the wellbeing of not only the diagnosed person but also for family members. Two-thirds of people with dementia live at home and family members are often the main care providers (Knapp et al., Reference Knapp, Prince, Albanese, Banerjee, Dhanasiri, Fernandez and Stewart2007). Caring brings both rewards and challenges, with many family carers experiencing both positive aspects of caring and carer burden (Roth et al., Reference Roth, Fredman and Haley2015). Caring for family members can be stressful and isolating, especially when the person with dementia changes their patterns of behaviour or style of relating to others (Cross et al., Reference Cross, Garip and Sheffield2018). About 32–40% of family carers of people with dementia have clinically significant depression or anxiety (Collins and Kishita, Reference Collins and Kishita2020; Cooper et al., Reference Cooper, Balamurali and Livingston2007; Kaddour and Kishita, Reference Kaddour and Kishita2020; Mahoney et al., Reference Mahoney, Regan, Katona and Livingston2005).
NHS England (2023) state that NHS Talking Therapy services (formerly Increasing Access to Psychological Therapy, or IAPT) should meet the needs of family carers, including carers of people with dementia. The IAPT Positive Practice Guide for Older People (2021) emphasises the effectiveness of cognitive behaviour therapy (CBT) for reducing psychological distress in family carers of people with dementia (Kwon et al., Reference Kwon, Ahn, Kim and Park2017), yet there are currently no carer-specific interventions recommended in the NHS Talking Therapy Manual (NHS England, 2023). The National Institute for Health and Care Excellence (NICE) guidance recommends that family carers of people with dementia should receive psychoeducation and skills training including education about dementia and caring strategies, in addition to skills to improve their communication style and improve their own physical and mental health (Box 1; NICE NG97; National Institute for Health and Care Excellence, 2018).
STrAtegies for RelaTives (START)
STrAtegies for RelaTives (START) is an evidence-based, open-access programme that meets NICE guidance for family carers of people with dementia. It is an eight-session manualised coping strategies intervention for family carers of people with dementia, delivered on a one-to-one basis by trained graduate psychologists (Livingston et al., Reference Livingston, Barber, Rapaport, Knapp, Griffin, King and Cooper2013; Livingston et al., Reference Livingston, Manela, O’Keeffe, Rapaport, Cooper, Knapp and Barber2020). The START intervention was evaluated in a large randomised controlled trial with family carers of people with dementia within one year of diagnosis, and was shown to be superior to usual care for both affective symptoms and quality of life (Livingston et al., Reference Livingston, Barber, Rapaport, Knapp, Griffin, King and Cooper2013). Family carers receiving START did not show the increase in stress and distress observed in carers in the control (usual care) arm of the trial.
START sessions include education about dementia, psychoeducation of coping skills, and relaxation skills (see Table 1 for a summary of session-by-session content). Between-session practice is encouraged, and home-based tasks are built into the programme.
Overview of START sessions
Information taken from START Manuals that are free to download from: www.ucl.ac.uk/psychiatry/research/mental-health-older-people/projects/start-resources/start-manuals
Recommendations for psychoeducation and skills training intervention for carers of people living with dementia (NICE NG97; National Institute for Health and Care Excellence, 2018)
-
Education about dementia, its symptoms and the changes to expect as the condition progresses
-
Developing personalised strategies and building carer skills
-
Training to help provision of care, including how to understand and respond to changes in behaviour
-
Training to adapt communication styles to improve interactions with the person living with dementia
-
Advice on looking after one’s own physical and mental health including emotional and spiritual wellbeing
-
Advice on planning enjoyable and meaningful activities to do with the person they care for
-
Information about relevant services (including support services and psychological therapies for carers) and how to access them
-
Advice on planning for the future
The psychoeducational content and relaxation exercises in START will be familiar to providers of low-intensity CBT, such as Psychological Wellbeing Practitioners (PWPs). More specifically, changing unhelpful thoughts (session 4) and behavioural activation (pleasant events scheduling; session 7) are techniques often used by PWPs for depression. The relaxation exercises that are practised at the end of each session (e.g. guided imagery, grounding, breathing) are often used by PWPs in low-intensity CBT for generalised anxiety disorder. In addition, generic skills for low-intensity CBT provision are relevant (e.g. encouraging participants to keep a record of their thoughts and behaviour; encouraging participants to try inter-session tasks).
Implementation of START
Seeking to establish the intervention as part of standard NHS provision, the START research team supported Camden and Islington IAPT services to run a pilot of embedding PWPs in a memory service to offer START (Department of Health, 2013) and also delivered fourteen 3-hour ‘train the trainer’ workshops for clinical psychologists and Admiral Nurses (specialist nurses supporting families affected by dementia) in nine different locations in the UK (London, York, Doncaster, Cambridge, Edinburgh, Teeside, Port Talbot, Leicester and Birmingham) between October 2014 and September 2015 (Lord et al., Reference Lord, Rapaport, Cooper and Livingston2017). Although 173 clinicians engaged with the ‘train the trainers’ programme, by the time of the 1-year post-training evaluation only 136 family carers had received START across 11 service areas (Lord et al., Reference Lord, Rapaport, Cooper and Livingston2017). Barriers to implementation of START were identified by the trained clinicians as (1) lack of time and resources (times required to set up the intervention locally; lack of junior colleagues to deliver the intervention; struggle to provide ‘extra’ interventions following service cuts); (2) lack of buy-in and support from colleagues and managers (lack of managerial support for a ‘new’ intervention; colleagues not feeling they have the skills to deliver or supervise this type of intervention); (3) lack of fit with current service context or professional approach (complexity of clients on caseload; lack of experience delivering such interventions) (Lord et al., Reference Lord, Rapaport, Cooper and Livingston2017).
Implementing new evidence-based research in practice is known to be challenging (Grol & Grimshaw, Reference Grol and Grimshaw2003). Embedding START into NHS practice proved slow, despite strategies intended to facilitate implementation, such as: the intervention being designed for delivery by graduate psychologists; freely available materials; and provision of a ‘train the trainers’ initiative. A number of services began delivering START, with written-up examples including Barnet Memory Service (Franklin & Lukeman, Reference Franklin and Lukeman2018), a mental health service for older adults in the North East of England (Conway & Straughan, Reference Conway and Straughan2017), and services in the voluntary and charitable sector (Amador et al., Reference Amador, Rapaport, Lang, Sommerlad, Mukadam, Stringer and Livingston2021). By 2019, START was reported as continuing in Camden & Islington (IAPT and Memory Service), and available in other NHS Trusts in London in addition to NHS Trusts in Cheshire, Durham, Sheffield, Sussex, Edinburgh, Northamptonshire, Manchester and Surrey (Knapp et al., Reference Knapp, Lorenz, Comas-Herrera, Livingston, Tinelli and Guy2019). However, a decade after the original evaluation was published, START is still not standardly available across England.
Rationale for group delivery
Although the START randomised controlled trial had evaluated individual delivery, the content of the START manual had been derived from a manual for psychoeducational groups designed and evaluated by Dolores Gallagher-Thompson and colleagues in Stanford, USA (Gallagher-Thompson & DeVries, Reference Gallagher-Thompson and DeVries1994; Gallagher-Thompson et al., Reference Gallagher-Thompson, Arean, Rivera and Thompson2001; Gallagher-Thompson et al., Reference Gallagher-Thompson, Coon, Solano, Ambler, Rabinowitz and Thompson2003; Gallagher-Thompson et al., Reference Gallagher-Thompson, Gray, Dupart, Jimenez and Thompson2008). An advantage of group interventions is the element of peer support, which is particularly beneficial for family carers of people with dementia (Carter et al., Reference Carter, Monaghan and Santin2020). It is also of note that some family carers who received START on an individual basis within the randomised controlled trial felt it could be improved by delivery in a group (Sommerlad et al., Reference Sommerlad, Manela, Cooper, Rapaport and Livingston2014). The NICE dementia guidance (NG97) includes the recommendation ‘carer interventions are likely to be most effective when provided as group sessions’ (National Institute for Health and Care Excellence, 2018). Some IAPT services set up carer groups prior to the START trial, as illustrated in the compendium of strategies to make IAPT more accessible for older people (Department of Health, 2013). Finally, delivery of START in a group format resolves an issue relating to the time allowances for low-intensity CBT protocols delivered in Talking Therapies services. Whereas one-to-one low-intensity interventions are limited to six, 30-minute sessions (i.e. less than half the time required to deliver 8×1-hour individual START sessions), Talking Therapies guidance states that ‘group interventions should involve multiple sessions up to the numbers recommended by NICE’ (NHS England, 2024).
Aims
The aims of this paper are to: (1) describe the delivery of START as a group programme as a collaboration between a Memory Service and NHS Talking Therapies for anxiety and depression; and (2) report the implementation of this service delivery model using the RE-AIM (Glasgow et al., Reference Glasgow, Vogt and Boles1999) framework.
Method
Design
This is a retrospective evaluation of real-world implementation activities to introduce, embed and sustain delivery of an evidence-based intervention for family carers of people with dementia.
Setting
The setting for this work is a mental health and community NHS Trust in north-east London. The Trust, covering four London boroughs each with its own Memory Service and Talking Therapies (IAPT) service, was a recruitment site for the START randomised controlled trial (Livingston et al., Reference Livingston, Barber, Rapaport, Knapp, Griffin, King and Cooper2013), under the local direction of a research-active Consultant Admiral Nurse. In common with standard IAPT procedures, the borough Talking Therapies services offer both low- and high-intensity CBT to people with common (primary care) mental disorders (mild-to-moderate anxiety and depression). Self-referral is encouraged and change monitored with self-report questionnaires including the Patient Health Questionnaire (PHQ-9; Kroenke et al., Reference Kroenke, Spitzer and Williams2001) and Generalized Anxiety Disorder-7 (GAD-7; Spitzer et al., Reference Spitzer, Kroenke, Williams and Löwe2006). The Memory Services provide assessment and diagnosis of dementia. Referrals typically come from General Practitioners concerned about an individual’s change in cognitive functioning. Following the ‘Croydon Model’ (Banerjee et al., Reference Banerjee, Willis, Matthews, Contell, Chan and Murray2007), generic initial assessments are undertaken by members of a multi-disciplinary team (psychiatrists, specialist nursing, psychologists, and occupational therapists) prior to discussion by the multi-disciplinary team. In the post-diagnostic period, service users with dementia are signposted to sources of information and support such as the Alzheimer’s Society. A focus on diagnostic services means that in-house psycho-social intervention is limited. Both the Talking Therapies and Memory Services are for ‘all-age’ adults, although the mean age of the former is considerably lower than the latter.
Implementation activity
Train the trainer (dissemination activity by research team)
Following the publication of the START randomised controlled trial, psychological practitioners in primary care (IAPT), secondary care, older adult community mental health teams and memory services were offered the opportunity to attend ‘train the trainer’ sessions, provided by the START research team, as were Admiral Nurses and other memory service staff.
Trustwide policy drivers
By 2016, a new driver came into play. Memory Services in the Trust were looking to extend psychosocial intervention provision to meet the standards for 5th edition of the Memory Services National Accreditation Programme (2022). START was included in the NHS Trust’s dementia strategy and in 2017 training for START delivery was included in the trustwide Research and Development training programme as part of an initiative to support implementation of evidence-based interventions.
Quality improvement initiative for distress reduction in family carers of people with dementia (single borough) – Talking Therapies–Memory Service collaboration
Also in 2016, a memory service psychiatrist in one borough approached the local IAPT lead to explore the potential provision of START by IAPT. At the time, there was little support for family carers in the borough. The Alzheimer’s Society had stopped a local carers’ group through lack of funding and there was no specialist carer support from Admiral Nursing. The IAPT lead gave permission for a tier 2 worker to pilot the START programme for individual carers (pilot 1). The IAPT worker and psychiatrist from the Memory Service each delivered the programme to one carer. Although carer distress reduced, IAPT criteria for recovery were not met. The pilot closed in IAPT and continued in the Memory Service. By September 2017 a second pilot was in place. This time, the memory service psychiatrist co-facilitated START in a group format with the IAPT worker. The IAPT (later re-branded ‘Talking Therapies’)–Memory Service collaboration for delivery of START in group format was considered a success, and the following model of service delivery was developed, with delivery via videoconferencing piloted during the COVID-19 pandemic.
Referral routes and eligibility criteria
Most referrals are made by Memory Service staff following diagnosis of the person with dementia. Referrals can also be made via other routes (e.g. Talking Therapies, Older Adults Community Mental Health Team). Family carers are deemed eligible for the group if they have: a relative with a diagnosis of dementia; the ability to converse and read in English; are willing to commit to attending a group once a week for eight weeks; no severe psychiatric disorder which would affect participation in the group and are not currently receiving another psychological intervention. Risk assessments are completed by Memory Service clinicians, who screen the participants before beginning the group, including use of PHQ-9 and GAD-7 to assess caseness for depression and anxiety respectively. If needed, risk plans are made with the Talking Therapies supervisor and discussed with the Memory Service.
Group format and content
The START group sessions are two hours long each week, with a 15-minute break mid-session, and run for eight weeks. Akin to most Talking Therapies group programmes, each session (beyond the first) begins with a review of the previous week’s between-session task. The main content from the START manuals is covered and the session finishes with practice of a stress-reduction exercise (see Table 1).
Group facilitation
Early groups were facilitated by a senior tier 2 worker and an established member of Memory Service staff. Once working practices were established, groups have been co-facilitated by a PWP from Talking Therapies and an Assistant Psychologist (AP) from the Memory Service.
Supervision and training
Supervision is provided weekly for both group facilitators from Talking Therapies, and dementia-specific advice is provided as required by the psychiatrist. A multi-disciplinary peer supervision group runs in the Memory Service for those providing one-to-one START, and staff have access to a monthly START reflective practice videoconference. Training for new staff (e.g. APs, PWPs, trainee clinical psychologists) is provided either in groups with personnel from other boroughs, or one-to-one locally.
Measurement of change
Standard measures for depression and anxiety (PHQ-9 and GAD-7, respectively) are supplemented with the Zarit Burden Interview as a measure of carer burden (ZBI; Zarit et al., Reference Zarit, Reever and Back-Peterson1980). All three measures are administered at the beginning and end of each group programme.
Client records
Appointments and progress notes are recorded by both Talking Therapies and the Memory Service due to the two services having different electronic client records. For Talking Therapies, group participants have their own note created for each session they attend, as per typical Talking Therapies protocol. For the Memory Service, a note is made on the person with dementia’s record documenting that their family carer will be attending the START group. Any following notes are made on the family carer’s own electronic record linked to their relative’s record.
Follow-up support
Post-group, participants are offered continued support if necessary. This may be a set of individual sessions of psychological therapy within Talking Therapies, and/or relevant local services such as Alzheimer’s Society or Age UK.
Implementation evaluation
We use RE-AIM as a framework within which to describe the ongoing implementation of START as group intervention delivered by a Talking Therapies–Memory Service collaboration. RE-AIM is a well-known framework for planning, evaluating or reporting implementations of health interventions (Glasgow et al., Reference Glasgow, Vogt and Boles1999; www.re-aim.org). A strength of RE-AIM is the focus on domains relevant to external (‘real-world’) validity. The five domains in RE-AIM are reach (service-user willingness to participate), effectiveness (impact on outcomes), adoption (staff willingness to deliver), implementation (delivery as intended) and maintenance (sustainment over time). More detailed explanations, and examples of the five domains, are provided in Table 2.
RE-AIM domains, evidence used and potential future service-based evidence
* Definitions from: https://re-aim.org/learn/what-is-re-aim/
Results
Train the trainers
Despite good attendance at the training sessions, the START intervention was not initiated in any of the four boroughs in either 2014 or 2015 (see Fig. 1). Correspondence with staff at this time highlighted the challenge of finding an appropriate home for the START intervention, for the following reasons: it was not a good fit for secondary care services which focus on people at high risk of self-harm; except for Admiral Nurses, memory service staff did not have the capacity to focus on family carer interventions; as specialist providers, Admiral Nurses had pre-existing intervention approaches; and IAPT workers did not feel confident that they had enough dementia-specific knowledge to deliver, or supervise the delivery of, the intervention.
Implementation timeline.
Trustwide policy drivers
By May 2018, START had been delivered to a total of 25 family carers across the Trust either in groups or one-to-one (data gathered following request from the START research team at UCL). START continued to be offered across the Trust to a small number of carers to 2021, predominantly by trainee clinical psychologists and assistant psychologists, but delivery has subsequently dwindled to nothing in all boroughs except that of the Talking Therapies–Memory Service collaboration.
Talking Therapies–Memory Service collaboration
The evidence used for each domain of the RE-AIM framework (Glasgow et al., Reference Glasgow, Vogt and Boles1999) is summarised in Table 2, and outcomes described in the following sections.
Reach (service-user willingness to participate)
START has been delivered jointly by the Talking Therapies and Memory Services to 10 groups of carers between September 2017 and March 2023, including two virtual groups during the pandemic. This represents a greater number of carers of people with dementia receiving START in the borough with the Talking Therapies–Memory Service collaboration than in other areas of the Trust.
Effectiveness (impact on outcomes)
From the 10 groups that have been run by the Talking Therapies–Memory Service collaboration, outcome measures are available for only 37 participants. Paired sample t-tests for pre–post completers data shows a significant reduction in anxiety [pre-group GAD-7 mean 10.3 (SD 5.8); post-group mean 8.7 (SD 6.0); t 36=2.113, p=0.040]; a trend towards significant reduction for depression [pre-group PHQ-9 mean 11.1 (SD 5.9); post-group mean 9.5 (SD 6.2); t 36=2.014, p=0.052], but no change in burden [pre-group mean ZBI 44.0 (SD 15.4); post-group mean 42.7 (SD 14.9); t 36=0.806, p=0.426]. Feedback from post-group satisfaction surveys has been positive with participants indicating that they are happy with the way sessions are organised, feel listened to by the facilitators, find the material relevant to their situation, feel that the sessions make a difference to their mood and leave the sessions feeling more able to cope. Specific comments on group format included: ‘It was helpful to meet other carers, it made me feel less alone’ and ‘I liked how openly we could talk about how we were feeling without being judged. It was also nice to meet people in the same position as me’. No negative comments were given.
Adoption (staff willingness to deliver)
The START intervention has been delivered by staff from a range of professional backgrounds including psychiatry, psychology, nursing and occupational therapy. For the past three years, the groups have been co-facilitated by Talking Therapies PWPs and Memory Services APs, with asynchronous turnover of each. This combination was experienced as being beneficial to service-users e.g. ‘We get a lot of people at IAPT that have caring responsibility looking after someone with dementia … Having a group with other people going through similar experiences and introducing CBT driven strategies can be so invaluable for them’ (PWP) and also for staff skills development e.g. ‘I was able to deepen my skills and knowledge around manualised CBT interventions’ (AP). The combination of resources and knowledge from the two services was seen as an important factor in the success groups, and the cross-service collaboration improved accessibility and facilitated cross-service referral pathways.
Implementation (delivery as intended)
There were several pilot phases within the Talking Therapies–Memory Service collaboration, namely the pilot delivery to individuals, the pilot delivery as a face-to-face group and the pilot of group delivery via online videoconference during the COVID-19 pandemic. Of these, all have been judged feasible, with the exception of individual delivery within Talking Therapies. The only significant adaptation, therefore, has been the move to group delivery, representing a reversion to the evidence base from the USA, and delivery to individuals over the telephone. Early in the implementation, the intervention was delivered by qualified psychological practitioners or staff from non-psychology professions within the multi-disciplinary team, allowing potential future supervisors and referrers to develop an insider understanding of the intervention. Once the intervention was established, delivery shifted to graduate psychologists, with training and supervision.
Maintenance (sustainment over time)
Delivery of both individual (Memory Services) and group (Talking Therapies–Memory Services collaboration) have moved from pilots to standard service provision. Continuity and oversight of the whole process has been maintained by consistent leadership such that the delivery of START has been sustained through the COVID-19 pandemic and turnover of junior staff.
Discussion
In this article we have described an implementation of STrAtegies for RelaTives (START), a NICE-compliant coping strategies intervention for family carers of people with dementia. Using the RE-AIM framework to structure presentation of implementation outcome, we have provided an illustration and evaluation of a model of collaborative working between a Talking Therapies service and Memory Service for delivery of START in group format, demonstrating the complementary nature of staff knowledge and skills, and the benefits to service-users and providers.
A key message from this implementation is the benefit of collaboration between graduate psychologists in Talking Therapies and the Memory Service, supported by their supervisors and services, to deliver an intervention for family carers of people with dementia. PWPs are skilled at tailoring manualised interventions for a range of individuals, have a good understanding of CBT theory and have often developed skills running groups. Assistant Psychologists in Memory Services typically have specific experience and knowledge of dementia as well as awareness of the challenges for family carers of people with dementia. This collaborative initiative improved connections between Talking Therapies and the Memory Service, allowing for discussion of potential cross-referrals and general enquiries. The connection has also increased clinicians’ confidence and knowledge. For example, Talking Therapies clinicians increased their knowledge of dementia and family caring, whilst Memory Service clinicians learnt some CBT-relevant skills. Memory Services often receive referrals where individuals’ mental health difficulties are part of the presenting problem, and therefore an understanding Talking Therapies service and CBT techniques are valuable to Memory Service clinicians. Equally, improving Talking Therapies clinicians’ understanding of dementia, family carers and older people via the START group is an important part of ‘embedding a silver thread’ into Talking Therapies provision of mental health care. The connection also improves Talking Therapies’ older adult referral rate, which is often under-represented. The collaboration has enhanced mutual understanding: although both Talking Therapies and Memory Services have separate aims and treatment options, there are similarities between the services. Both services have structures that are focused on a high volume of triage, assessment and signposting, as well as often seeing clients who are low-risk and may have never accessed a mental health service before. Clinicians in both services are familiar with identifying common mental health difficulties.
Strengths and limitations
A strength of this evaluation is that it provides a real-world example of implementing an evidence-based intervention. Finding a way to implement START in Talking Therapies is important as psychological interventions for family carers are often unfunded in Memory Services. Although Talking Therapies is a successful approach to research-to-practice implementation of evidence-based psychological interventions across England (Clark, Reference Clark2011), there is no intervention for family carers of people with dementia included in the Talking Therapies Manual (NHS England, 2023).
A limitation of this paper is that is it has been constructed retrospectively using local records, reports and correspondence; metrics were not planned in advance. The proportion of family carers taking up the offer of START in the Talking-Therapies–Memory Service collaboration is not known as a systematic record of the number of family carers offered START has not been kept. Family carers of differing kinships, ages and ethnicities have taken part, but the extent to which they represent the local population is not known as demographic characteristics have not been systematically recorded. The service-user feedback forms were developed ‘in house’ without any consideration of psychometric properties, and outcome data were not available for all participants as measures were only collected at the beginning and end of the group programme rather than at every session.
Service implications
We have described contrasting service-level outcomes for START in different boroughs of the same NHS Trust. Although all boroughs were subject to the same national and Trust-wide policy, and each had both a Memory Service and Talking Therapies service, there were local variations in availability of support for family carers, for example through Admiral Nursing and voluntary sector provision. Where the provision of START dwindled, this was largely related to turnover of trainee and assistant psychologists and their supervisors in a psychology-driven initiative. This is in contrast to the borough in which the Talking Therapies–Memory Service collaboration took place where referral to, and delivery of, START was supported by staff from a range of professional backgrounds. Sharing knowledge and expertise built confidence in staff delivering the intervention, and sharing resources and administrative tasks reduced burden on each individual service. Between-service contact was facilitated by Talking Therapies and Memory Services being located on the same NHS site, with group space available in the Memory Service accommodation. Crucially, with group facilitation being shared across the two services, and with sustained leadership and supervision, maintenance of delivery over time was not unduly affected by staff turnover.
In our Talking Therapies–Memory Service collaboration, some carers who did not quite meet caseness on either PHQ-9 or GAD-7 were allowed to attend a START group alongside family carers who did meet caseness criteria. Currently, Talking Therapy services generally do not accept referrals from individuals who do not meet the threshold for clinical caseness on the PHQ-9 or GAD-7. This has implications for the wider implementation of START in Talking Therapies services and represents a potential barrier to the adoption of START into the Talking Therapies Manual. The evidence base for START is as a preventative intervention, minimising the escalation of stress and distress compared with that seen in the control (usual care) arm of the START randomised controlled trial 4–6 months after the intervention was complete (Livingston et al., Reference Livingston, Barber, Rapaport, Knapp, Griffin, King and Cooper2013). The START research team suggest that carers learn skills for the future, and long-term follow-up showed ongoing benefits 6 years after receipt of the intervention (Livingston et al., Reference Livingston, Manela, O’Keeffe, Rapaport, Cooper, Knapp and Barber2020). Not all family carers will meet the requirement for caseness on measures of anxiety or depression. For example, of 307 family carers screened in the memory service described in this paper, only 37% met criteria for mild to moderate anxiety or depression (Turnbull & O’Connor, Reference Turnbull and O’Connor2018). Some family carers will minimise their difficulties when completing standardised measures meaning that there is little room for improvement on psychometric tools. In contrast, other family carers may score highly on standardised measures of anxiety and depression but the emotional and practical burden of day-to-day caring (especially in the context of additional stressors such as demands from work or the needs of other family members) means that stress and distress may not be alleviated in the short term. Measuring post-intervention symptom reduction does not capture the potentially beneficial effects of long-term implementation of coping skills in the context of chronic, progressive conditions. If local services are evaluating the effect of START, it may be useful to also consider brief measures of coping, self-management or self-efficacy.
Future developments
The Talking Therapies–Memory Services START group was held virtually during the COVID-19 pandemic. Virtual groups benefit carers with mobility or transport problems, time restrictions due to other responsibilities (e.g. work, childcare), or those whose attendance is contingent on finding cover for continuous monitoring required for the safety or wellbeing of the person with dementia. However, using technology such as online questionnaires and videoconferencing software was a barrier for some. In future, the services are planning to offer both face-to-face and virtual groups. This will allow carers to attend according to their preferred modality.
START manuals have been translated into Hindi, Urdu, Japanese and Spanish (see START website). The manuals have also been culturally adapted for black and South Asian carers (Webster et al., Reference Webster, Amador, Rapaport, Mukadam, Sommerlad and Livingston2023) with the adapted manuals replacing the originals to become the new standard. Further adaptations have been created for carers of people with Parkinson’s disease dementia, and dementia with Lewy bodies, with the potential for START groups specific to dementia sub-types in the future.
Recent years have seen an expansion in training for psychology graduates wishing to work within the psychological professions. A new route has been developed via an apprenticeship for Clinical Associate Psychologists with competences relevant to the delivery of START. There is also potential for co-delivery of START with family carers who have previously taken part in the intervention and are experts-by-experience.
Finally, the RE-AIM outcome framework could be used to plan the evaluation of future developments in implementation, as indicated in the final column of Table 2.
Conclusion
Collaborative Talking Therapies–Memory Services implementation of START as a group intervention has increased family carers’ access to psychoeducation and skills training in the locality described. In terms of the RE-AIM domains: the group collaboration reached a higher number of carers than other initiatives (reach); there was a significant reduction in caregiver anxiety and a trend towards a significant reduction in depression (effectiveness); feedback from service users and clinicians on the model has been positive (adoption); group delivery was supported by audio and visual materials (implementation) and the initiative sustained through COVID-19 and staff turnover (maintenance). The complementary knowledge, skills and remits of the services, and mutual learning for service personnel, have been key to sustainment over time. Encouraging similar collaborations could enhance the reach of START to support family carers’ skills, confidence and psychological health.
Key practice points
-
(1) STrAtegies for RelaTives (START), a NICE-compliant, coping-focused intervention for family carers of people with dementia with an evidence-base for one-to-one delivery by graduate psychologists can be successfully implemented as a low-intensity group.
-
(2) Many strategies included the START intervention will be familiar to Psychological Wellbeing Practitioners as they are also in low-intensity protocols for anxiety and depression.
-
(3) Collaboration between NHS Talking Therapy Services and Memory Services can mutually improve clinician skills, confidence and knowledge in both services, to the benefit of service-users.
-
(4) Clinicians seeking to implement an evidence-based intervention in their service should consider using an implementation framework such as RE-AIM to plan an evaluation of the implementation.
Data availability statement
Data in this paper are not publicly available. This paper represents a service evaluation using standardly collected data.
Acknowledgements
The authors would like to thank colleagues including Satwant Singh, Farrah Dowlutt, Isabel Vosa-Baigrie, Amrita Dhillon and Raakave Yoganathan along with clinical psychologists, trainees and assistant psychologists who have supported delivery of the START programme in NELFT.
Author contributions
Victoria Cannon: Data curation (equal), Writing – original draft (lead), Writing – review & editing (equal); Ronja Kuhn: Data curation (equal), Investigation (equal); Georgina Turnbull: Conceptualization (equal), Data curation (equal), Investigation (equal); Georgina Charlesworth: Conceptualization (equal), Supervision (equal), Writing – review & editing (equal).
Financial support
This research received no specific grant from any funding agency, commercial or not-for-profit sectors.
Competing interests
The authors declare none.
Ethical standards
The authors have abided by the Ethical Principles and Codes of Conduct as set out by relevant professional bodies (BABCP, BPS, HCPC, GMC). The START intervention was delivered as part of routine clinical practice, and measures collected were also part of routine clinical practice.
Open access
Comments
No Comments have been published for this article.