Background
Dementia affects approximately 50 million people worldwide [
1], and is characterised by difficulties with cognition, behaviour, motor performance, and everyday functioning, amongst others, all of which can vary by the dementia subtype [
2,
3]. Depending on the symptom severity, unpaid carers (family members or friends) can also be affected by the dementia, by providing increased levels of unpaid care [
4]. This in turn can cause higher levels of carer burden, therefore the needs of unpaid carers are of equal importance and should be supported in the dementia-caring process.
Generally, people living with dementia (PLWD) want to remain independent and living in their own home for as long as possible, without wanting to rely on others [
5]. To enable living in the community for as long as possible, paid carers become a vital aspect of care for many PLWD as the condition advances. Home care can include both support with instrumental activities of daily living, such as helping with food preparation, and more basic activities of daily living, such as personal care with bathing and toileting or getting dressed. Needing support with personal care is usually more pronounced as the dementia progresses [
6], and home care services are often employed when the PLWD becomes more dependent with daily activities [
7] and/or the unpaid carer, a family member or friend, is unable to provide sufficient support [
8]. However, across Europe, receiving formal care is often perceived as a threat to PLWD’s independence and thus only accessed if required [
9].
While receiving home care is beneficial to both the PLWD and the unpaid carer, if available, there are many issues surrounding paid home care. Often, carers only visit for a short period of time to ensure medication adherence or getting a person in and out of bed for example, with little time for interaction with the PLWD [
10]. Moreover, it is rarely the same paid carer who visits the home, but various different carers coming in each day, which can be difficult for the care recipient to build a rapport with the carers [
11].
Since the first recorded case of COVID-19 in Wuhan, China, on the 31st of December 2019, COVID-19 has spread all across the globe and has had severe impacts on everyone’s life. To reduce the spread of the virus, severe public health restrictions have been put in place in most countries, which in itself can have a negative impact on people’s lives. In particular, COVID-19 related public health restrictions of lock down and social distancing can have a direct impact on the care they receive. Considering that the pandemic is going to lost for the foreseeable future, and face-to-face care needing to be adapted to continue being provided in a safe way, it is important how unpaid carers make decisions surrounding paid home care workers entering the home. Even post-COVID-19, it will be useful to understand how carers make risk management decisions for paid home care, as other pandemics or endemics might happen in the future.
The aim of this study was to explore the decision-making processes of unpaid carers in receiving paid home care for someone living with dementia in the time of COVID-19. To date, no research has explored the impact of COVID-19 on paid home care changes and adaptations, and how unpaid carers are making decisions about home care services. While the needs of PLWD are not subsiding and thus carers still need to provide care, this study will shed light on how unpaid carers judge the risk of strangers providing care versus providing care themselves, where possible. This study will provide vital and highly novel and topical evidence on how paid home care services are delivered and adapted in this pandemic, with findings having implications for continued paid home care provision.
Methods
Participants and recruitment
Unpaid carers (family members or friends) aged 18 or above were eligible to participate. For this analysis, we only included interviews from unpaid current carers who have had experiences of accessing, or trying to access, paid home care (n = 15).
Participants were recruited nationally via social care and social support services using convenience sampling. These support services included for example both regional and national carer and dementia organisations, who have a carers and PLWD receiving their newsletters, attend groups, and/or are linked in with other activities that create a network between carers and/or PLWD. To support recruitment, services provided information about the study in newsletters, and directly contacted eligible participants over the telephone to discuss the study. Contact details of eligible participants were forwarded to a researcher, who then contacted the participants.
We received ethical approval from the University of Liverpool Ethics [ID 7626].
Data collection
Semi-structured interviews were conducted by telephone. The interview topic guide (
Supplementary file) was co-developed with carers, PLWD, clinicians and academics. Data were collected between April and early May. Within this time period, a full nationwide lockdown was in place across the UK, with people only allowed to go outside once a day for essentials (food, medication) or for exercise. Vulnerable and older adults (to which younger people with dementia did not belong) were shielding, therefore recommended to not go outside at all and have food and other essentials delivered. No person was allowed to see anyone outside their households.
Carers were asked about their experiences of accessing social support services, including paid home-care services, before and since the COVID-19 outbreak. Participants were also asked about their demographic backgrounds, including age, gender, relationship to the person with dementia, postcode, years of education, type of dementia of the person they care for, as well as weekly hours of informal care before and since the virus outbreak. The interview guide is attached as
Supplementary file.
Data analysis
The overall recruited sample was 50 PLWD (n = 8) and unpaid carers caring for PLWD who lived with the carer (n = 23), who resided in a care home (n = 5), or who were living independent of the carer (n = 13). This sub-analysis on 15 interviews has been conducted from the interviews with unpaid carers only, who were solely responsible for the care of the PLWD (i.e. the PLWD was not residing in a care home during the time of the pandemic) and who were accessing paid care at the time of COVID-19, to specifically explore their experiences of accessing paid care. Interviews were conducted whilst participants continued to be recruited, allowing for recruitment to stop when the point of saturation was met, which occurred at 50.
Audio recordings were transcribed into verbatim scripts by a paid typist with extensive transcribing experience. Each transcript was anonymised and re-read for accuracy, allowing the authors to fully immerse themselves in the narratives before coding.
Transcripts were coded by all members of the research team (CG, MG, SB, LS, JC, SC, KH, KW). CG oversaw and allocated transcripts to each analyst. Line-by-line, manual coding of each transcript was employed individually by two researchers/trainees, and identified codes were discussed jointly to generate themes. Data were analysed using both inductive and deductive thematic analysis [
12] by the eight research team members and trainee clinical psychologists. Of the 50 recruited participants, up to 35 transcripts were coded using inductive thematic analysis, which were discussed between transcribers. This generated the identified themes, with subsequent transcripts being coded using deductive thematic analysis to complement those themes.
Discussion
This is the first study to show the impact of COVID-19 public health restrictions on receiving paid home care in dementia. Unpaid carers had to make difficult choices on whether to continue paid home care, and where it was discontinued, experienced a strong impact on their lives as carers.
Paid home care is often characterised by numerous different carers entering the home, with families however valuing consistency in care workers [
13]. In light of COVID-19, receiving a large number of different carers each week can increase the risk of virus transmission into their home directly by contamination of surfaces or by providing basic care in close proximity to the PLWD. This caused a great deal of worry to unpaid carers, as they had no knowledge of whether individual paid home care workers adhered to public health restrictions or met up with members of different households after work. Specifically, where care workers fail to bring and use suitable PPE, many carers experience distress and feel helpless. With a severe shortage of PPE in the UK already in the healthcare sector, including hospitals, the social care sector is likely to face even more shortages, despite the great focus on some of the most vulnerable of our society. PPE usage reported by carers was not always consistent, which is in line with a recent review on PPE recommendations and usage [
14]. Therefore, to enable unpaid carers to continue receiving paid home care, the care sector needs to be better, and consistently, equipped with PPE. With a considerable emphasis in the news on the increased risk for chronically ill and older people, this further caused heightened levels of fear of likely fatal outcomes from COVID-19 infections.
Carer burden is already a large problem in dementia care, with family members and friends providing an estimated £14 billion of care each year in the UK alone [
15]. Levels of burden increase with increased symptomatology as the dementia progresses [
16]. Considering that paid home care is supposed to take some of the caring duties away from unpaid carers, suddenly having to pick up additional caring duties due to COVID-19 restrictions and risk management decisions can place an additional layer of burden onto the carer. Carers can in certain ways be supported better by accessing other forms of social support services, such as peer support groups or respite care [
17]. However, due to the pandemic, these services have been severely affected also, not offering the once provided benefits for many people any more and resulting in reduced levels of well-being for carers. Therefore, other ways of supporting carers need to be found, to ensure that carers do not have to suffer from increased levels of burden and poorer mental well-being.
While some unpaid carers discontinued paid home care, others accepted the potential risks posed by non-household members (care staff) entering the home. Some carers needed the support from professional carers in looking after the person with dementia, and would have been unable to cope otherwise. Carers thus made risk management decisions, which follow recently highlighted risk management strategies by Gasmi and colleagues [
18], highlighting the need for individual assessment of risk factors for example based on medical conditions, gender, age, lifestyle, and environmental risks. Managing the risk of contracting COVID-19 thus needs to be based on individual circumstances and cannot be a one-size fits all approach. Whilst these unpaid carers might have been more accepting of carers entering the home, care staff still needs to be supported better in providing home-based care, allowing more families feeling comfortable of receiving much needed support from care staff.
This study also had some limitations. We only interviewed unpaid carers and their experiences of accessing paid home care for their relative with dementia in the time of the pandemic. However, we did not interview paid home care staff, and the effects of providing care in clients’ homes in light of COVID-19, potential lack of PPE, and the risks of potentially becoming infected have to date not been explored. In England and Wales, social care staff are some of the employment groups experiencing some of the highest rates of COVID-19 related mortality [
19]. Moreover, a recent rapid review showed that health care staff working with patients in novel virus outbreaks are at increased risk of suffering psychological distress when being younger, as well as having a family member infected by the virus, with adequate PPE, rest, and support reducing morbidity [
20]. Future research needs to explore the effects on social care staff and care workers specifically and their experiences and impacts on psychological well-being of providing care in the time of COVID-19, as well as care home staff where very limited evidence exists to date [
21]. Moreover, whilst this study is representative in terms of gender distribution, with women representing the largest proportion of unpaid dementia carers globally [
22], future research should explore specifically the perceptions of male unpaid carers towards risk management decisions in receiving paid home care during this pandemic.
Conclusions
This is the first study providing important insights into the decision-making processes and experiences of receiving paid home care for dementia in the time of the pandemic. Paid home care is significantly affected by family members’ decisions on whether care should be continued or not. Considering the increased burden on unpaid carers where decisions are made to discontinue care, improved guidance and logistical support needs to be in place for care staff, in terms of access to and proper usage of adequate PPE, and potentially reducing the numbers of care staff entering the home, to further minimise the risk of potential virus transmission. This could be partly facilitated by technology, for example providing updates on care plans and which staff members are currently off sick with the virus. This is a significant concern considering the close proximity in which care is usually provided, by showering, dressing, and supporting the PLWD to use the toilet. With PLWD being less likely to entering a care home in the current climate of the pandemic, due to further increased risk of virus transmission, enabling easily accessible and safe paid home care is becoming even more important to support PLWD living at home.
Acknowledgements
Without the support of those living with dementia and those unpaid carers having taking part, this study would not have been possible. We wish to thank the trainees (Kate Cotton, Mishca Hughes, Benjamin Kwapong, Rachel Elliott) and organisations which have helped recruiting and/or analysing data, and Maxine Martin and Lynn McClymont for transcribing the audio files very swiftly to analyse the data in time.
Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit
http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (
http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
Publisher’s Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.