How does the delivery of paid home care compare to the care plan for clients living with dementia?

Abstract Many people living with dementia choose to remain in their own homes, supported by home‐care workers, who provide care that is specified in care plans. We explored how care plans of clients living with dementia, compared with ethnographic observations of home care they received. In a secondary, reflexive thematic analysis, we reviewed care plans for 17 clients living with dementia and transcripts from 100 h of observations with 16 home‐care workers delivering care to them. Our overarching theme was: Care plans as a starting point but incomplete repository. Clients’ care plans provided useful background information but did not reflect a wealth of knowledge home‐care workers built through practice. Two sub‐themes described: (a) Person‐centred care planning: whether and how the care plan supported tailoring of care to clients’ needs and (b) Filling in the gaps: home‐care workers often worked beyond the scope of vague, incomplete or out‐of‐date care plans. We found considerable inconsistencies between care plans and the care that was delivered. Care plans that were comprehensive about care needs, and rich in person‐specific information aided the delivery of person‐centred care. Lack of documentation was sometimes associated with observed failures in person‐centred care, as helpful information and strategies were not shared. Including information in care plans about how, as well as what care tasks, should be completed, and frequently discussing and updating care plans can create more person‐centred plans that reflect changing needs. Electronic care planning systems may support this.


| INTRODUC TI ON
Across Europe and the USA, around two-thirds of people with dementia live at home (Willink et al., 2020) and most prefer to remain in their own homes for as long as possible (Evans et al., 2019).
Paid home-care workers can support this (Dempsey et al., 2016).
Home care is mostly provided by independent businesses in the UK (Sutcliffe et al., 2021), with workers known by a variety of terms (Cooper et al., 2017); for this study, we will use the term 'homecare workers'. The home-care worker role is commonly perceived as undesirable (Schneider et al., 2019), and resourcing these workers is challenging (Hughes & Burch, 2020), with high staff turnover (Skills for Care, 2020). Despite ideals that home care is meaningful and responsive to individual needs (Dawson et al., 2015;Keogh et al., 2018), it has been scrutinised, in the UK and Ireland, for inconsistencies in the quality of care provision and the working conditions for home-care workers (Genet et al., 2011). Gaps in care provision are often bridged by the individual's family (Brodaty & Donkin, 2009;Cherry et al., 2019).
Sixty percent of UK people receiving home care are living with dementia (Carter, 2015). Home-care support for dementia that incorporates person-centred approaches is considered the 'Gold standard' (Love & Femia, 2015) with the focus on the individuality of the person and their interactions and relationships with others (Hoel et al., 2021;Kitwood, 1997). Home-care workers are well placed to promote person-centred care, although they often feel unsupported to carry out their roles effectively (Cooper et al., 2017;Leverton et al., 2021aLeverton et al., , 2021b. Care plans are documents intended to communicate information and inform decision-making (Burt et al., 2014); yet, their use is relatively unstudied. Titles of existing publications, for example, from general practice: 'Are we stripping the care out of care plans?' (Bacon et al., 2017) or from dementia healthcare settings, 'Who's actually gonna read this?' (Drummond & Simpson, 2017), convey a sense that in healthcare settings, their value is unclear. Care plans have been described as onerous documents: repetitive, time consuming, sometimes incomplete and inaccurate (Drummond & Simpson, 2017) or 'only as good as their creator' (Hsu et al., 2019). Some care recipients are unaware of their existence (Bacon et al., 2017).
Home-care agencies have a duty to maintain good governance. In England, the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014 require (and the Care Quality Commission regulates) that agencies 'maintain securely an accurate, complete and contemporaneous record in respect of each service user, including a record of the care and treatment provided'. Care plans are central to how home-care agencies deliver care, though their utility and impact have not been studied in this setting. Social services and home-care agencies collaborate to agree care plans with clients or their family members where they lack capacity to do so. As people living with dementia face communication barriers to guide their own care, the issue of how intentions and realities of care align are particularly pertinent in this population. In the current study, we considered how the delivery of home care compares to the agreed care plan for clients living with dementia, by examining care plans and ethnographic observational field notes of home-care visits to clients living with dementia.

| Study design
The study was approved by London (Camden and King's Cross) National Research Ethics Service (NRES) (reference: 17/LO/1713).
Full details of procedures are reported elsewhere (Leverton et al., 2021a(Leverton et al., , 2021b. We undertook a secondary qualitative analysis of the ethnographic data derived from this earlier study, alongside an analysis of care plans for the clients observed, collected during the original study but not previously analysed.

| Participant observations
We invited 11 home-care agency managers to participate. They were purposively selected to encompass both local authority and What is known about this topic?
• Home-care services support over 350,000 older people in the UK.
• Sixty percent of UK home-care workers work with people living with dementia.
• Domiciliary care organisations rely on care plans to inform the care they provide to people living with dementia.

What this paper adds?
• The care observed often differed in important ways from the instructions within the care plan of the person living with dementia because the care plans had not been updated for some time.
• Whilst some care plans gave explicit instructions to guide person-centred care, in many, guidance was generic and untailored to the client. This left home-care workers to 'fill in the gaps'-often creatively, but this learning was not documented and therefore unavailable to the wider home-care team.
• Our findings suggest that there may be a role for more dynamic information-sharing systems in supporting the implementation of person-centred care within the home-care sector; newer electronic systems may enable this.
privately owned agencies from urban and semi-rural locations (two in London, two in South and two in North England The researchers also collected client care plans from the agency manager. Care plans were filed in the agency offices, as electronic documents that were available to home-care workers. Agency procedures varied regarding whether a copy was also held at the clients' home and whether home-care workers could access it on site via an electronic system or only as a document on the agency computer. There was also variation in how frequently plans were updated and between home-care workers in how frequently they consulted them for individual clients. Plans contained information about care needs, illness and personal details relevant to care provision and information about the tasks that home-care worker(s) were to complete during visits. Confidential information was redacted prior to analysis. Home-care agencies were assigned ID numbers between 1 and 6. We pseudo-anonymised participants' names: Letter 'A'-for homecare workers, e.g., 'Alison', 'B'-for clients living with dementia, e.g., 'Brenda' and 'C'-for family carers, e.g., 'Cameron'.

| Data analysis
We used a Reflexive Thematic Analysis approach (Braun & Clarke, 2006, 2019. Taking a constructivist perspective, we considered the dynamic between the home-care workers and the person living with dementia. This epistemological perspective is well suited to ethnographic studies involving direct naturalistic observations (Williamson, 2006).
We compared the care plans of clients with their ethnographic field note observations to explore how the care observed aligned with the care that was instructed by the care plan. One researcher (PB) led the analysis; first, by becoming immersed in the data for each case study, comprising the client care plan, the familiarisation and observation visits for each home-care worker-client dyad or triad where a family carer was also observed. PB made notes about the care plan instructions, tasks and personal information about each client and considered how these compared with the field note observations. All co-authors were allocated a proportion of case studies to read and independently explored developing themes.
We noted patterns of meaning, understanding and empirical knowledge within case studies and then across the data (Bowen, 2009). We generated initial 'codes', which were labelled and grouped into broader concepts. These were used to identify themes and sub-themes (Braun & Clarke, 2006. Theme development was inductive and recursive, to ensure themes were meaningfully coherent (Braun & Clarke, 2006. ML, AB and JBD, who collected the primary observations, aided interpretations by reflecting on these experiences during data analysis, and as a team, we reflexively considered how our backgrounds, in mental health nursing (PB and KHD), psychiatry (CC) and social science (AB, ML and JBD), shaped our interpretations (Braun & Clarke, 2021;Cherry et al., 2019). We regularly discussed findings, interpretations and reflections to ensure that the analysis remained true to the research question (Connelly & Peltzer, 2016).

| Description of data
ML, AB and JBD observed 16 home-care workers supporting17 people living with dementia, for whom we also collected agency care plans. Home-care workers were all female, with a mean age of 48.9 years. We included 3 men and 14 women living with dementia, aged between 61 and 96 years. Home-care visits ranged from 15 min to 2 h and included observations of home-care workers undertaking personal care tasks, meal preparation, medication management, companionship and everyday housekeeping tasks (see Table 1 for client and visit characteristics). The researchers observed 100 h of home care, generating 104 individual field note transcripts.
Most home-care workers were observed working alone, but some worked in pairs to support clients. Family carers were also observed in some visits. Table 2 lists the dates of the last review of care plans, together with the date range of observations conducted. We noticed variations between each care plan in terms of the length of the plan (4-22 pages) and how often the care plan was reviewed and updated (8/17 had been written or updated in the 4 months prior to the first visit), whilst for cases 1, 3 and 16, it had not been updated for nearly 2 years. In Table 2, we include excerpts from care plans illustrating how practical details of care, and information to personalise care was referenced in the plans. This illustrates that some care plans (e.g., cases 2 and 5) include relatively scanty information, others very detailed and personalised information (e.g., care plan 9, 12).

| Qualitative findings
We identified one overarching theme, Care Plans as a starting point but incomplete repository, with two sub-themes. The first sub-theme, Person-centred care planning, describes how the degree to which plans were tailored and relevant to the client appeared to influence the extent to which they mirrored the care that was delivered. The home-care worker, Annie, was observed also using the purple diary to communicate information to other home-care workers who support Benita: Annie updates the diary in the kitchen (that all the care team and Benita read and input to), to record the neighbours visit and she tells me that events that are important like people visiting, or telephoning go in the diary to help Benita remember they have happened and to keep track of when she last saw or spoke to someone. (Field note-Case 12) In another example, tailored information about how to manage the client, (Bonnie)'s, anxiety provided a clear plan for the home-care workers to follow. The client's care plan had recently been updated and highlighted the specific triggers/factors which caused her to become anxious, distressed or confused, detailing specific instructions for the home-care workers to follow when Bonnie becomes anxious: 'Ask (Bonnie) to look at her black and red purses and prompt (Bonnie) to look at her savings book in her bag. Also, please remind her during this stage that she owns her home and has 3 bank accounts and in one of them she has a substantial amount (which daughter is keeping safe). 1 savings account is in the bag, 2 accounts her pension goes in, and this account pays her bills (water, electricity, gas and phone The cat comes in and goes near Belinda. Anya shouts at the cat to get away from Belinda and her dinner and says I don't like cats. Anya gently kicks the cat away. (Case 11) A number of care plans included generic statements about dementia, rather than more specific, tailored advice as in the examples above.
For example: People with dementia can become apathetic and uninterested in their usual activities … they may also lose intent in socialising. (Care plan-Case 8) In practice, the home-care worker, Aysha, and client, Bea, (case 8), were regularly observed engaging in social conversation, and as in the example below, the client initiated and engaged the researcher in conversation. Bea's ability or desire to socialise was not described in the care plan as the information provided was not tailored to her as an individual: The conversation is light-hearted and covers a variety of topics and Bea includes me [the researcher]in their conversation about holidays that she is going on, reminiscing about the work she used to do, and how she likes singing and dancing. (Field note-Case 8) In the following observation between a home-care worker, Audrey, and her client, Beatrice, Beatrice's mobility had deteriorated (as described in an earlier section above), and her needs had changed in the preceding weeks, resulting in her care being completely provided in bed. The researchers observed that a mattress was placed on the floor to cushion any potential falls: The room is also cramped because of the fall mattress that is next to Beatrice's bed and takes up the majority of the floor space. Audrey visibly struggles to move around this and avoids standing on it. (Field note-Case 10) However, the care plan had not been updated to reflect the client's change in situation or how this might impact on care provision.

Sub-theme B-'Filling in the gaps'
In this second sub-theme, we explored how home-care workers used their intuition, skills and knowledge of the client to compen-  (Hennelly et al., 2021), help to minimise risks from unmet needs (Molony et al., 2018), are more likely to enhance autonomy (Lambert, 2019), and sense of self of individuals living with dementia (Førsund et al., 2018). Our findings seem to accord with this. We report examples where care plans were up to date and tailored to the current care situation, and the care plan appeared to concord with the care delivered in practice. In other instances, the converse was true, highlighting the need for care plans to be updated regularly, particularly for people living with dementia where symptoms and deterioration can progress quickly.
The need to 'fill in the gaps' could lead to home-care workers experiencing increased stress and a greater sense of accountability for their actions; as described previously, home-care workers experienced considerable stress, related to feelings of onerous responsibility for clients (Leverton et al., 2021a(Leverton et al., , 2021b. Our findings suggest that home-care providers could usefully reevaluate how they use care plans and set standards for their regular review to promote consistency of care. This may involve introducing digital solutions such as electronic care records, currently used within many residential care homes (Shiells et al., 2019). Whilst digital care approaches such as health portals document and exchange client information between stakeholders as a dynamic process

| Strengths and limitations
Whilst this was the largest observational study to date in home care, the sample may not be representative of all home-care clients or providers. Whilst we speculate that more detailed, person-centred care plans enabled more person-centred care (and these factors seemed to be linked), it is also possible the home-care agencies which have greater resources, or better management, review care plans more regularly and are more facilitating of person-centred care in other ways, through staff working conditions and training, for example.
The potential impact of the observers of the naturalistic environments they sought to observe must also be acknowledged.

| CON CLUS IONS
In the context of dementia, the associated complexities of the condition, where the client's needs can rapidly change, can render care plans redundant unless they are designed to be flexible, regularly updated and responsive to the condition. This study concludes that where care plans are vague or lacking in personcentred client information, the need for home-care workers to 'fill in the gaps' is increased, risking inconsistent care provision and home-care worker stress. A comprehensive care plan that is readily available to the home-care worker can enhance and support a person-centred approach, contribute to better care for people living with dementia and enhance working conditions for the home-care workers.

ACK N OWLED G EM ENTS
We would like to thank the home-care agencies who participated.

CO N FLI C T O F I NTE R E S T
The Author(s) declare(s) that there is no conflict of interest.