Introduction
‘Dementia’ is an umbrella term describing a group of diseases that result in progressive damage to nerve cells in the brain affecting memory, language, perception, problem-solving, and behaviour. Globally, dementia is the seventh leading cause of death and a major cause of disability and dependency at a cost of US$ 1.3 trillion (World Health Organisation, 2025). In the United Kingdom (UK) there are around 1 million people sixty-five and over with dementia, with 84 per cent in England (Alzheimer’s Society, 2024), and over 30,000 people with young onset dementia (Carter, Reference Carter2022). Around 700,000 carers support people in the community (Alzheimer’s Society, 2021), spending 1.1 billion hours providing unpaid care (Luengo-Fernandez and Landerio, Reference Luengo-Fernandez and Landeiroin preparation). More than 10,000 people with dementia occupy one in four National Health Service (NHS) hospital beds each year, often experiencing longer stays and discharge delays (NHS Digital, 2023; National Institute for Health and Care Excellence – NICE, 2024). It is therefore unsurprising that health and social dementia services are under pressure to demonstrate value while still improving quality of life and care. ‘Social value’ (Public Services (Social Value) Act, 2012) is measured according to the ‘triple bottom line’ of social, environmental, and economic impacts (Slay and Penny, Reference Slay and Penny2014). One approach to achieving the triple aim that is gaining notable momentum is co-production (Fusco et al., Reference Fusco, Marsilio and Guglielmetti2020), including person-centred care-planning co-production with people affected by dementia (National Collaborating Centre for Mental Health – NCCMH, 2018).
The value of person-centred co-production in health and social care
Co-production is a multi-dimensional concept that operates across multiple levels and involves individuals with diverse resources and capacities. Within health and social care, it occurs between the providers of services (professionals, service leaders, policy makers) and the users of services as experts-by-experience – including people with dementia, and their unpaid carers who are considered ‘partners-in-care’ to reflect a partnership approach to dementia care (Carers Trust, 2017). It is not just about talking things through together, but the person playing an active role in decision-making, using their skills and expertise to shape and implement their own care (Think Local Act Personal – TLAP, 2023). This represents a shift in power, as power is shared in equal partnership in the commissioning, design, and delivery of services (Slay and Stephens, Reference Slay and Stephens2013; Webb et al., Reference Webb, Girardi and Stewart2021). Co-production is therefore viewed as radical and disruptive, demanding a fundamental challenge to the status quo of health and social care services (Carr and Patel, Reference Carr and Patel2016). However, anecdotal evidence suggests that most organisations attempting co-production fall short of real power for experts-by-experience (Skills for Care, 2018).
Co-production is specifically included in the Care Act, 2014 legislation for England, stating that everyone should experience control in their own care. There is no single framework or technique to support organisations with co-production. However, models united by overlapping principles are offered within the literature. For example, following Arnstein’s participatory decision-making work highlighting the critical difference between having actual power to affect change and the ‘empty ritual of participation’ (Arnstein, Reference Arnstein1969: 216), numerous versions of the ‘ladder of citizen participation’ depict a sequence of steps towards achieving co-production (for example, Slay and Stephens, Reference Slay and Stephens2013).
Co-production endorses a person-centred care (PCC) perspective and vice versa (Berntsen et al., Reference Berntsen, Yaron, Chetty, Canfield, Ako-Egbe, Phan, Curran and Castro2021). PCC embraces the person as an equal partner in every aspect of care and sits at the core of care quality. Such principles of individuality and dignity have long been echoed in the context of dementia care under the ‘personhood’ concept, recognising the inherent worth of persons with dementia despite cognitive decline (Kitwood, Reference Kitwood1997). The volume of health and social care co-production research is rising; however, it remains a conceptually fragmented field (Masterson et al., Reference Masterson, Areskoug Josefsson, Robert, Nylander and Kjellström2022) with low scientific maturity (Fusco et al., Reference Fusco, Marsilio and Guglielmetti2020) due to its intrinsically complex and compelling nature, challenging service norms and care decision-making processes. Nevertheless, the growing body of evidence tells us that co-production improves service user autonomy and competence, underpinning their ability to make change in their own lives (Michaelson, Reference Michaelson, Hämäläinen and Michaelson2014; Social Care Institute for Excellence – SCIE, 2024). It makes the most of local resources and expertise, improving commissioning decision effectiveness (Boyle et al., Reference Boyle, Coote, Sherwood and Slay2010; Slay and Penny, Reference Slay and Penny2014). This in turn enhances both satisfaction and outcomes – conceptually associated with significant savings in societal costs (Phillips and Morgan, Reference Phillips and Morgan2014). Health and social care co-production therefore paves the way for significant outputs that not only benefit patients through improved subjective wellbeing, satisfaction, and health outcomes, but starts a cascade of improvement that benefits services through enhanced innovation and more cost-effective and responsive services (Barker, Reference Barker2010; Palumbo, Reference Palumbo2016; Skills for Care, 2018).
Person-centred care-planning co-production with people affected by dementia
Palumbo (Reference Palumbo2016) pointed to three levels of perspective for co-production. The macro level concerns ‘co-governance’ of planning and designing health intervention delivery, the meso level focuses on ‘co-management’ of interventions with homogeneous groups, and the micro level examines co-production ‘partnership’ within the one-to-one relationship between the health or social care professional and the patient themselves. One such intervention at the micro level is care-planning. ‘Care-planning’ is the process by which the person and professional create and review an action plan to achieve the goals of treatment. For people with dementia, this is completed within outpatient, hospital, or general practitioner services, or the local council (NHS, 2021). The ‘care plan’ is the written document recording the outcome of the care-planning process (Burt et al., Reference Burt, Rick, Blakeman, Protheroe, Roland and Bower2014). Crucial to delivering quality care, it is expected that a care plan is developed following dementia diagnosis (Department of Health – DoH, 2020; NHS, 2021) – it sets out what sort of care the person might need, how they can keep doing things important to them, information about and access to services, regular health condition monitoring, and the named professional to act in a coordinating role.
Of the research in care-planning co-production that does exist, much focuses on adult mental health populations. Patients (Bee et al., Reference Bee, Price, Baker and Lovell2015) and carers (Doody et al., Reference Doody, Butler, Lyons and Newman2017) are motivated to collaborate in care-planning, yet person-centred care-planning and shared decision-making strategies are often absent or sub-optimally applied in practice (Menear et al., Reference Menear, Girard, Dugas, Gervais, Gilbert and Gagnon2022). Nevertheless, the role of the patient as an effective member of the health or social care team who adds co-created value is recognised. Through Regulation 9, the Care Quality Commission (CQC) for England requires service providers to ensure PCC is achieved in partnership, with the person and partners-in-care involved in care-planning, management and review (CQC, 2025). As with any adult, people living with dementia should be supported to co-produce their care plan to ensure they receive PCC (Clark et al., Reference Clark, Tucke and Whitlatch2008; SCIE, 2014; DoH, 2019; Bosco et al., Reference Bosco, Schneider, Di Lorito, Broome, Coleston-Shields and Orrell2020). Intervention examples include Villar et al (Reference Villar, Celdrán, Vila-Miravent and Fernández2019), who explored involving institutionalised people with dementia in care-planning meetings and found improvements in observed quality of life, particularly around personal development, relationships, and inclusion. Orsulic-Jeras et al (Reference Orsulic-Jeras, Whitlatch, Szabo, Shelton and Johnson2019) evaluated a counselling-based care-planning intervention for community-dwelling people with early-stage dementia and family caregivers (care dyads). They found engagement to be good, with strong, open, and trusting relationships within a care dyad as the foundation for achieving programme goals. Yet, many people who lack capacity often miss out on their right to make or influence important decisions about their own care (SCIE, 2014).
Our previous review of the empirical literature identified eight international papers that addressed care-planning co-production practice from the perspectives of people living with dementia and their partners-in-care (Stewart et al., Reference Stewart, Gray and Livanou2025). Principles of care-planning co-production and indicators to gauge that co-production had taken place were uncovered. Yet, it also highlighted the dissatisfaction of people affected by dementia feeling positioned as passive recipients, and their largely absent voice in day-to-day care-planning knowledge-exchanges and decision-making. This piqued an interest in whether nationally directed requirements and recommendations support the co-production practice identified by the experts-by-experience. England was one of the first countries in the world to develop a National Dementia Strategy (DoH, 2009), supported by the Prime Minister’s Challenge (DoH, 2012). The UK went on to host the first ever G8 dementia summit (G8 UK, 2013), which called for greater global innovation to improve quality of life for people with dementia and partners-in-care while reducing emotional and financial burden, to reduce stigma and exclusion, and for people affected by dementia to be treated with dignity and respect – enhancing their contribution to prevention, care, and treatment. Co-production practice is also now legislated (Care Act, 2014 and Health and Care Act, 2022) and regulated (CQC, 2025) for health and social care services in England. Accordingly, it is reasonable to suggest the national practice guidance and recommendations for care-planning co-production with people affected by dementia in England will provide learning that has international merit. A scoping review was therefore conducted to map the body of knowledge available from the relevant legislation, policy, and guidance for England:
What are the statutory requirements and non-statutory recommendations within the national legislation, policy, and guidance for England on care-planning co-production with people living with dementia and their partners-in-care?
Method
We employed a two-phase process. Phase 1 comprised a systematic search of the legislation, policy, and guidance for England on care-planning with people affected by dementia. This was followed by a data charting process to extract the relevant information from the included documents and present in a table format. Category construction was utilised for Phase 2 to synthesise the outcome of the data charting. Key care-planning co-production categories were presented in a table format with an accompanying narrative. The scoping review was registered with the Open Science Framework (OSF) on 3 February 2023 (https://doi.org/10.17605/OSF.IO/Y9CKR). This was a systematic review of statutory and non-statutory publications, rather than empirical literature. However, where relevant, this article followed the PRISMA-ScR reporting format (Tricco et al., Reference Tricco, Lillie, Zarin, O’Brien, Colquhoun, Levac, Moher, Peters, Horsley, Weeks, Hempel, Akl, Chang, McGowan, Stewart, Hartling, Aldcroft, Wilson, Garritty, Lewin and Straus2018).
Phase 1: Systematic search and charting of the national legislation, policy, and guidance on care-planning co-production with people affected by dementia
Search strategy
The first author completed a systematic search of four online legislation, policy, and guideline repositories in July 2024. National legislation, policy, guidance, standards, commissioned reports or reviews, and working papers for England were sought by initially searching for the key term ‘dementia’. The full databases were searched on the UK legislation (www.legislation.gov.uk), UK Government publications (www.gov.uk/government/publications), NHS England (NHS-E, www.england.nhs.uk), and NICE (www.nice.org.uk) websites. The search in the UK legislation database was restricted to ‘All UK Legislation (excluding originating from the EU)’. The UK Government publications database was restricted to ‘Guidance & Regulation’ and ‘Policy Papers & Consultation’. The NHS-E search was restricted to ‘Publications’. Finally, the NICE database search was restricted to ‘Guidance’, ‘NICE advice’ and ‘Quality Standards’ types with ‘Published’ status. A pragmatic search (snowballing) was employed to determine any additional documents by searching the related documents and reference lists of the identified documents. Searches were limited to written documents relating to England and available in English with issue dates between 2014 and 2024. Where there were multiple versions of the same document, only the most recent was selected.
Screening and eligibility
Documents were selected if people affected by dementia (people living with dementia or a partner-in-care of someone with dementia) were an included population, any mention of the process of care-planning was included, and the process of co-production (including the broader principles of empowerment, participation, involvement, and inclusion) was a focus.
A document was excluded if it was an adapted or summary report, a case study example, or an update on a primary source, and was included only if it added new information. Further, we excluded documents if they primarily focused on advance care-planning, including palliative or end-of-life care, as this centres on preparing for future decisions rather than planning for current decisions in everyday care.
A two-stage process was undertaken for the selection of documents. (1) Alongside keyword searches for ‘dementia’, ‘care plan*’ and ‘co-produc*’, titles and summaries were screened against the eligibility criteria by the first author. (2) When documents appeared relevant, a second screen consisted of both authors reading every full text against the same criteria to review inclusion eligibility.
Data extraction
Characteristics and key information from the documents were charted using a Microsoft Excel worksheet created by the first author (including issuer and publication year, document title, type of document, stated aims, co-production language used, and content in relation to the co-production of care-planning). The first author piloted and adjusted items to ensure standard information could be extracted for each document. Data charting was completed by the first author, with the second author checking the charted information as a means of verification.
Phase 2: Generation of statutory requirement and non-statutory recommendation categories for care-planning co-production practice with people affected by dementia
All references to co-production of care-planning requirement or recommendation were extracted. Extracts were coded line-by-line by the first author and clustered into tentative groupings. Groupings were modified iteratively by considering how they related to each other to identify patterns, and organised into descriptive categories. The content for each category was then arranged by statutory requirements and non-statutory recommendations. The second author then reviewed the resulting categories against the original documents. Lastly, a narrative summary was developed.
Results
Phase 1: National legislation, policy, and guidance on co-produced care-planning with people affected by dementia
The searches revealed 231 hits from initial search terms (Figure 1). There were no duplicates, and therefore all documents were screened, of which 209 were excluded for not meeting inclusion criteria. Twenty-two documents were selected and read in-depth for evidence on co-production of care-planning with people affected by dementia, of which six were excluded. Pragmatic searching of the included documents uncovered three additional documents. Nineteen documents were therefore included in the review.
Flowchart of the search strategy (adapted from PRISMA-ScR, Tricco et al., Reference Tricco, Lillie, Zarin, O’Brien, Colquhoun, Levac, Moher, Peters, Horsley, Weeks, Hempel, Akl, Chang, McGowan, Stewart, Hartling, Aldcroft, Wilson, Garritty, Lewin and Straus2018 and PRISMA, Page et al., Reference Page, McKenzie, Bossuyt, Boutron, Hoffmann, Mulrow, Shamseer, Tetzlaff, Akl, Brennan, Chou, Glanville, Grimshaw, Hróbjartsson, Lalu, Li, Loder, Mayo-Wilson, McDonald, McGuinness, Stewart, Thomas, Tricco, Welch, Whiting and Moher2021).
Document characteristics
Phase 1 charting demonstrated the characteristics of the statutory and non-statutory publications on co-producing care-planning in practice with people affected by dementia (Table 1). Searches of legislation, policy, and guidance documents for England delivered mixed results. UK law sets out requirements for universal care-planning practice through the Health and Care Act, 2022, the Care Act, 2014 for England, and the Mental Capacity Act (MCA) 2005 for England and Wales. There were no legislative documents that met the inclusion criteria; however, there was one statutory guidance document (1) for England. Non-statutory documents were included in the form of a quality standard (1), a policy paper (1), a case study (1), and a commissioned report (1), with the majority in the form of practice guidance documents (14). There were no documents specifically tackling co-production, care-planning, and dementia. Nevertheless, reference to each could be found across the documents. The nineteen documents included in the review were published between 2014 and 2024.
Characteristics of included documents (n = 19)
The co-production values language most used across the included documents was ‘involvement’ (18), followed by ‘participation’ (14), ‘empowerment’ (10), and ‘inclusion’ (8). Under half of the documents specifically referenced the term ‘co-production’ (8).
Phase 2: Key statutory requirement and non-statutory recommendation categories for care-planning co-production practice with people affected by dementia
Synthesis of results revealed seven key categories representing statutory requirements and non-statutory recommendations (Table 2). These included ‘person-centred care plan’, ‘accessibility and support’, ‘involvement of person with dementia’, ‘involvement of partners-in-care’, ‘decision-making’, ‘treatment goals and outcomes’, and ‘care plan review’.
Key care-planning co-production categories from included documents
Abbreviations: Department of Health (DoH); Department of Health and Social Care (DHSC); Local Authority (LA); Mental Capacity Act (MCA); National Collaborating Centre for Mental Health (NCCMH); National Health Service England (NHS-E); National Institute for Health and Care Excellence (NICE); Social Care Institute for Excellence (SCIE).
Person-centred care plan
Fundamental to care-planning with people affected by dementia, and forming the first category, was the existence of a joined-up ‘person-centred care plan’ owned by the person with dementia. The primary principle within statutory guidance on the Care Act, 2014 and the Health and Care Act, 2022 was that both the care-planning process and resulting plan were holistic and person-centred, reflecting all elements that were important to the individual and not limited to needs that the local authority (LA) was under a duty to meet (Department of Health and Social Care – DHSC, 2024). This was reflected within non-statutory recommendations (SCIE, 2014; DoH, 2015, 2016; NICE, 2015a, 2016; DHSC, 2015, 2018; NHS-E, 2017b, 2020; NCCMH, 2018), with an emphasis on the proactive responsibility of service providers to explore the person’s broader wishes before needs relating to the condition itself (SCIE, 2014; NHS-E, 2020).
Statutory guidance (DHSC, 2024) and practice recommendations (DHSC, 2018; NHS-E, 2020) stated the person received a physical copy of their plan and signed to indicate agreement (NICE, 2015a). The NHS Long-term Plan specifically referred to care plan access and communications from professionals via the NHS App (NHS-E, 2019). According to statutory guidance, care plans should be developed in conjunction with any other plans (DHSC, 2024), with practice recommendations highlighting the interrelated nature of multiple long-term conditions (NICE, 2015a; DoH, 2016; DHSC, 2018). To ensure that the person knew how to contact the LA, statutory guidance stated that there was a named contact or lead professional, considered both as part of care-planning and in the final plan (DHSC, 2024). The DHSC (2018) also recommended that the named professional establish and record which professionals the person would like to know about their diagnosis (DHSC, 2018). Practice recommendations elaborated on the benefit of co-creating a meaningful plan the person felt invested in (NHS-E, 2017b; DHSC, 2018; NCCMH, 2018; NICE, 2019) and of meeting face-to-face (NICE, 2018a). The Cares Trust (2017) specifically recommended creating defined posts responsible for supporting partners-in-care.
Accessibility and support
The ‘accessibility and support’ category included preparation prior to care-planning to meet support needs and ensure an accessible process and resulting plan. Statutory guidance stated providers should gain a sense of involvement level the person wished to achieve, their confidence to take a lead, and the support needed to do so meaningfully (DHSC, 2024). Planning choices ranged from support for the person to understand care-planning discussions and options available to them, to jointly developing their plan with the provider alone or with partners-in-care (DHSC, 2024). Practice recommendations explored the importance of meeting individual information needs to ensure individuals knew what to expect, including identifying those with lower levels of health literacy, knowledge, skills, or confidence to manage their condition, and offering additional support to help them express views, preferences, and aspirations as part of care-planning discussions (NICE, 2018b; NHS-E, 2020). All support offered would be evidenced in the care plan (SCIE, 2014).
Statutory guidance required flexibility and adjustment to ensure accessible care plan formatting is meaningful and makes sense to the person, rather than being dictated by a standard template or provider recording requirement (DHSC, 2024). Practice recommendations referenced the Accessible Information Standard (NHS-E, 2017a) and the need to identify and record how the person wished to communicate (NICE, 2018b). Statutory guidance required services to provide the support and time the person needed to consider their options (DHSC, 2024), with recommendations referring to advocacy and interpreters (NICE, 2018b), orientation to time, place and beliefs concerning a decision (SCIE, 2014), techniques for communication and aids (NICE, 2018b), plain language in records (NICE, 2018b; NHS-E, 2020), environmental conditions to support communication (NICE, 2018b), and filling in gaps in the person’s understanding (SCIE, 2014). The Carers Trust (2017) recommended specific staff training in how to involve others, including communication strategies to enable people with dementia to remain engaged for as long as possible.
Involvement of person with dementia
Valuing the person with dementia as a full partner in developing their care plan, and ensuring they had access to an independent advocate under the Care Act – and Independent Mental Capacity Advocate (IMCA) under the MCA (2005) – made up the ‘involvement of person with dementia’ category. The MCA was prominent throughout the documents, and seemed to be key to unlocking co-production practice with people with dementia and cognitive impairment. The LA was required by statutory guidance to involve the person the plan was intended for, in addition to taking all reasonable steps to agree how needs were to be met. The emphasis was on the person having every reasonable opportunity to be involved in planning to the extent that they chose and were able (DHSC, 2024). Practice recommendations echoed this, specifically referring to ‘active’ involvement or participation in joint care plan development and to choice, control, and dignity (SCIE, 2014; DoH, 2015, 2016; NICE, 2015a, 2016, 2018a; DHSC, 2015, 2018; NHS-E, 2017b, 2019, 2020; NCCMH, 2018). It highlighted how care-planning should value the person’s expertise, skills, strengths, and experience with equal importance (NHS-E, 2020), and suggested co-producing positive statements that celebrated what was still possible and the person could still do (DHSC, 2015). In the absence of appropriate representatives for supporting the person’s involvement in care-planning, the statutory guidance required LAs to arrange an independent advocate (DHSC, 2024) with non-statutory documents citing the Care Act (NICE, 2018b).
Involvement of partners-in-care
The ‘involvement of partners-in-care’ category was similar to that of the person with dementia as a care-planning partner; however it also included MCA principles to guide practice and provide safeguards. Statutory guidance set the context that, along with the person, partners-in-care would have the best understanding of how identified needs fitted into the person’s life as a whole and connected to overall wellbeing. It was a requirement that the partner-in-care be involved in the planning process (DHSC, 2024). Practice recommendations linked the care-planning process into the person’s existing support network, seeking and valuing the knowledge, expertise, skills, strengths, and experience of partners-in-care with equal importance (SCIE, 2014; NICE, 2015a, 2015b; Carers Trust, 2017; NHS-E, 2020). Partners-in-care (where authorised) were full partners, fully involved in jointly developing the care plan and decision-making (DoH, 2015, 2016; NICE, 2015a, 2018a; Carers Trust, 2017; DHSC, 2018; NCCMH, 2018; NHS-E, 2019). The DoH (2015) cited the ‘Triangle of Care’ (Carers Trust, 2017) as a useful framework.
Statutory guidance stated providers should start with the presumption the person at the heart of the care plan should give consent for others to be involved, and the LA should have safeguarding principles embedded to ensure there were no conflicts of interest. Further, providers should include a prompt during the initial stages of the planning process to ask whether there was anyone else the person wished to be involved (DHSC, 2024). Practice recommendations promoted the person’s decision about who was involved (NICE, 2018b; NHS-E, 2020). The statutory requirement for LAs to act in the best interests of the person according to the MCA, and to make best interests decisions about who else was involved where the person lacked capacity, was also stated (DHSC, 2024). Recommendations referred to confidentiality considerations (NICE, 2020), and, in line with the Care Act, records of what involvement from others the person wanted in their care and support (NICE, 2018b). Clear, routinely used policies and mechanisms included guidelines and protocols on confidentiality, information sharing (between the person, partners-in-care and professionals), and capacity assessment and best interest decisions (Carers Trust, 2017). Statutory guidance also stated that providers should consider the partner-in-care’s own needs (DHSC, 2024). However, the Carers Trust (2017) took this further by suggesting designated ‘carer leads’ promote good practice among colleagues, be the point of contact, and share resources with commissioners. Professionals and service providers, therefore, had responsibility for managing all stakeholders within the Triangle of Care.
Decision-making
The ‘decision-making’ category was characterised by upholding the right of the person to be involved in decisions about their own care, as well as the right of others within the principles of the MCA. Statutory guidance reinforced the premise that the person had the best understanding of how needs fitted into their life and wellbeing. As per the MCA, every adult had the right to make their own decisions in respect of their care plan, and be assumed to have the capacity to do so unless it was proven otherwise. This was even if others regarded these decisions as unwise or unusual. Consequently, the LA was expected to take all reasonable steps to agree the plan with the person (DHSC, 2024), which was reiterated in the practice recommendations (SCIE, 2014; DoH, 2016; NHS-E, 2017b, 2020; NICE, 2018a, 2018b). Practice recommendations highlighted the agency, determination, and need for control in one’s life and care-planning decisions of people with dementia (DHSC, 2015) who should be listened to and understood in a way that builds trusting and effective relationships (NHS-E, 2020). Recommendations also referred to the potential stigma attached to someone’s inability to self-advocate, advising this should be directly addressed. It pointed to managing professionals’ anxieties when collective decisions on behalf of the person with dementia needed to be taken, and to challenging knee-jerk, risk-averse tendencies to ensure rights to privacy, autonomy, and power (DHSC, 2015) that might become a barrier to achieving care-planning co-production.
LAs were required under statutory guidance to use the MCA when someone was deemed to lack capacity, including Deprivation of Liberty Safeguards (DoLS) legislation and the use of the Best Interests Principle (and independent advocacy where required). Guidance also pointed to potential for fluctuation in needs – consequently comprehensive provisions and contingencies in the event of a sudden change or emergency should be reflected in the care plan (DHSC, 2024). Recommendations referred to fluctuation and change over time (SCIE, 2014) and support for decision-making (e.g. independent advocacy) (NHS-E, 2017b). If the person lacked the capacity to make their own decision, then consideration should still be given to their views. NICE (2020) guidelines specifically referred to partner-in-care involvement in decision-making, considering capacity and wishes around confidentiality.
Treatment goals and outcomes
The ‘treatment goals and outcomes’ category focussed on supporting the person as a full partner in collaborative goal-setting. There were no statutory guidance items within this category. However, non-statutory practice recommendations referred to a person-centred approach that took into account cultural differences and preferences. It should reflect what the person wanted to change or achieve and what motivated them, focus on the person’s own strengths, and help them realise their potential to regain independence rather than just what professionals felt they should achieve. The plan must have had agreed personalised outcomes included and an action plan showing how they would be supported to achieve these, written from a personal perspective rather than in service language (DHSC, 2015; DoH, 2016; NICE, 2017; NHS-E, 2020).
Care plan review
The ‘care plan review’ category represented the frequency and ways in which care plans should be reviewed, including mental capacity considerations as per the MCA. Statutory guidance set out the expectation that care plan review occurred at least once a year; however, a ‘light-touch’ review should be considered 6–8 weeks after the plan had been signed off. Dates for planned reviews would be set with the person during interventions, care-planning, or through general monitoring. An unplanned review could result from a change in needs or circumstance that the LA became aware of, or a person (or other interested party) could request a review (DHSC, 2024). Practice recommendations referred to the care plan as a living document, reviewed with the person, partners-in-care (as appropriate), and relevant professionals in line with the Care Act (NICE, 2015a, 2016, 2018a, 2019; Carers Trust, 2017; NHS-E, 2017b, 2020; DHSC, 2018; NCCMH, 2018), with informal review on an ongoing basis (NICE, 2015a; NHS-E, 2020) and opportunity to request a more formal review and care plan update when needs changed (DHSC, 2018; NCCMH, 2018; NHS-E, 2020). Results of reviews and any changes would be recorded in the care plan (NICE, 2015a).
The person-centred outcomes-focused nature of the care plan review process, involving the person and partner-in-care, was referred to in statutory guidance, as well as accessibility and proportionality. It also stipulated that in all cases following review, additional content to the care plan should be guided by and agreed with the person the plan was intended for (and any other person they requested) (DHSC, 2024). To facilitate the co-production LAs must arrange an independent advocate; however, the Care Act created a duty rather than a power in relation to advocacy and care reviews (DHSC, 2024). Practice recommendations added the need to take into account how capacity might change over time when reviewing a care plan (SCIE, 2014), and regular review (at least every 6 to 12 months or when requested) of whether and how the person would like others to be involved (NICE, 2018).
Discussion
The UK government for England led the way on the international dementia agenda (DoH, 2009) and in recent years has been a strong advocate of co-production principles, including its application in care-planning practice (Care Act, 2014 and Health and Care Act, 2022). National practice guidance and recommendations for England on care-planning co-production with people affected by dementia therefore have international application. We found no legislative documents that met the strict inclusion criteria; however, ‘co-production’ is specifically included in the Care Act, 2014, and this filtered through to statutory and non-statutory publications. Although reference to each was found across publications, no single document specifically addressed care-planning co-production practice within dementia care, risking messages getting lost that value people affected by dementia as fundamental experts in good care-planning. However, collectively the care-planning co-production statutory requirements and non-statutory recommendations did support the principles of and indicators for care-planning co-production practice identified by people affected by dementia previously reported within the international empirical literature (Stewart et al., Reference Stewart, Gray and Livanou2025). The synthesised categories overlapped in both reviews; however, the learning from the perspective of people affected by dementia gave greater emphasis to preparedness in relation to steps needed before embarking on care-planning. Whereas the requirements and recommendations for England convey greater emphasis to the PCC framework (Kitwood, Reference Kitwood1997; Berntsen et al., Reference Berntsen, Yaron, Chetty, Canfield, Ako-Egbe, Phan, Curran and Castro2021).
If the national statutory and non-statutory guidance in this review and the empirical literature (Stewart et al., Reference Stewart, Gray and Livanou2025) largely align, what might account for the apparent disconnect between the values-based co-production messages in policy and the reported dissatisfaction of people affected by dementia in practice? Care-planning occurs within complex health and social care systems that are often fragmented, not least from upheaval generated by NHS policy shifts, reorganisations and reforms (Bramwell et al., Reference Bramwell, Checkland, Shields, Allen, Bramwell, Checkland, Shields and Allen2023). Systemic pressures such as workforce constraints (DoH, 2019) and challenges with skill mix and values (Bramwell, et al., Reference Bramwell, Checkland, Shields, Allen, Bramwell, Checkland, Shields and Allen2023) also face professionals and service providers, layering barriers to co-production implementation. Further, despite the regulator’s intention to ensure personalised care and treatment (CQC, 2025), achieving PCC delivery in practice often relies on professionals deeming it the ‘right thing to do’ rather than being service led (Berntsen et al., Reference Berntsen, Yaron, Chetty, Canfield, Ako-Egbe, Phan, Curran and Castro2021). It was of note that much of the guidance fell short of describing exactly how professionals should approach the co-production process in practice. Yet it often cautioned against care plans reflecting service need or professional goals – generating questions about who care plans were being written for. Consequently, the onus to deliver on co-production ambitions seems to sit with professionals who may not be clear about the function of a care plan, and may still be uncertain about how to overcome potential co-production barriers. This is especially relevant in relation to variation in mental capacity as a consequence of changes in cognition, communication, and insight associated with dementia. To address co-production at the macro level of health service design and delivery, meso level of interventions for dementia as a population, and micro level within individual relationships (Palumbo, Reference Palumbo2016) within the Triangle of Care, training is required at each level alongside the use of economic and regulatory feedback (Berntsen et al., Reference Berntsen, Yaron, Chetty, Canfield, Ako-Egbe, Phan, Curran and Castro2021).
Conceptual ambiguity is another challenge to care-planning co-production practice implementation. The included documents all used co-production values language, however under half specifically referenced the term ‘co-production’. This is perhaps unsurprising given the conceptual and empirical infancy of co-production in health and social care (Fusco et al., Reference Fusco, Marsilio and Guglielmetti2020; Masterson et al., Reference Masterson, Areskoug Josefsson, Robert, Nylander and Kjellström2022). Nevertheless, a vague definition of co-production in policy could perpetuate misconceptions that people with dementia cannot participate in co-production as experts-by-experience. It could also lead to confusion in guidance interpretation, variation in provider expectations, and inconsistencies in professional practice – raising the question of how professionals and service providers are expected to translate co-production principles into everyday care-planning. The lack of robust evidence base for care-planning co-production interventions in dementia care presents another barrier to practice improvement. There is little in the literature addressing how co-production practice outcomes (identifying what changed) can be measured (quantifying what changed), with conceptual obscurity adding complexity. Most studies measuring co-production in health and social care report process measures rather than validated outcomes, limiting comparability and cumulative learning (Nordin et al., Reference Nordin, Kjellström, Robert, Masterson and Josefsson2023), and there are no core outcome sets for evaluating care plan co-production interventions in dementia care (COMET, n.d.). Consequently, there are currently few quality indicators available to researchers beyond the assertion that there was no co-production process, and now there is. This lack of standardised outcome measures limits the evaluation of any care-planning co-production interventions that are being developed. Without conceptual clarity and an evidence-based approach, we cannot accomplish practice improvement, assurance, or regulation.
Limitations
The current review has some limitations. The potential for evidence selection bias from one author leading the initial screen of the documents is noted. Accordingly, both authors cross-referencing the whole search strategy process would have improved the screening procedure. Nevertheless, we aimed to mitigate this risk through the inclusive search strategy, followed by co-author evaluation of each full-text document retrieved for eligibility review and co-author verification of the synthesis following data extraction. Subsequent reviews might also expand the search parameters to include the remaining nations within the UK, as legislation, policy, and guidance may differ for Scotland, Wales, and Northern Ireland and bring additional insights. Similarly, a scope of international approaches would be of benefit.
Conclusions
Person-centred care-planning co-production with people living with dementia and their partners-in-care is legislated by the UK government for England. Although its application in practice remains a relatively obscure area in research, what we do know suggests its delivery is rarely achieved. Although reference could be found across our included documents, we were unable to uncover any legislation, policy, or guidance specifically tackling care-planning co-production practice in dementia – it is therefore perhaps unsurprising that the rights-based person-centred co-production messages that value individuals as experts in their own experiences and therefore fundamental participants in good care-planning get lost. Much of the guidance also fell short of describing exactly how professionals could approach care-planning co-production in dementia care – this lack of practical direction may go some way to explain the disconnect between the expectations placed on service providers to co-produce care-planning with people affected by dementia on one hand, and the reported experience of these groups on the other hand who remain dissatisfied with being positioned as passive recipients. We conclude that stronger evidence-based needs to be built and more practical guidance generated to ensure people affected by dementia are valued and included in care-planning co-production practice.
Data availability statement
All data is included in the manuscript.
Acknowledgements
We thank Ellie Gray for her support with early exploration of the grey literature, and Dr Kieran Breen for his support with the final manuscript.
Author Contributions: CRediT Taxonomy
Inga Stewart: Conceptualization, Data curation, Formal analysis, Investigation, Methodology, Project administration,Resources, Software, Validation, Visualization, Writing - original draft, Writing - review & editing.
Maria Livanou: Conceptualization, Formal analysis, Methodology, Supervision, Validation, Writing - review & editing.
Funding statement
This scoping review is the product of a research programme funded by a St Andrew’s Healthcare Clinical Research Fellowship. The funders had no role in the study design, data collection, and analysis, or decision to publish.
Competing interests
The authors declare none.
Ethical standards
There are no human participants in this article, and informed consent is not required.
