Mole et al.

BMC Geriatrics (2019) 19:250

https://doi.org/10.1186/s12877-019-1270-4

RESEARCH ARTICLE Open Access

‘It’s what you do that makes a difference’ An

interpretative phenomenological analysis of
health care professionals and home care
workers experiences of nutritional care for
people living with dementia at home
Louise Mole1,2* , Bridie Kent2,3,4, Mary Hickson1,2 and Rebecca Abbott2

Abstract
Background: People living with dementia at home are a group who are at increased risk of malnutrition. Health
care professionals and home care workers, are ideally placed to support nutritional care in this vulnerable group.
Yet, few, if any studies, have captured the experiences of these workers in respect of treating and managing
nutritional issues. This interpretative phenomenological study aimed to explore the experiences and perceptions of
the nutritional care of people living with dementia at home from the perspectives of health care professionals and
home care workers.
Methods: Semi-structured interviews were conducted between December 2017 and March 2018, and
supplemented with the use of a vignette outlining a scenario of a husband caring for his wife with dementia.
Health care professionals and home care workers were purposively recruited from local care providers in the south
west of England, who had experience of working with people with dementia. An Interpretative Phenomenological
Analysis (IPA) approach was used throughout.
Results: Seven participants took part including two home care workers, a general practitioner, dietitian,
occupational therapist, nurse and social worker. The time in their professions ranged from 3 to 15 years (mean = 8.9
years). Following analysis, four superordinate themes were identified: ‘responsibility to care’, ‘practice restrained by
policy’, ‘in it together’, and ‘improving nutritional care’. This group of health care professionals and home care
workers recognised the importance of improving nutritional care for people living with dementia at home, and felt
a responsibility for it. However they felt that they were restricted by time and/or knowledge. The importance of
supporting the family carer and working collaboratively was highlighted.
Conclusions: Health care professionals and home care workers require further training to better equip them to
provide nutritional care for people living with dementia at home. Models of care may also need to be adapted to
enable a more flexible and tailored approach to incorporate nutritional care. Future work in this area should focus
on how health care professionals and home care workers can be better equipped to screen for malnutrition, and
support changes to nutritional intake to mitigate malnutrition risk.
Keywords: Dementia, Nutrition, Health care professionals, Interpretative phenomenological analysis, Home care

* Correspondence: louise.mole@plymouth.ac.uk
1
Institute of Health and Community, School of Health Professions, University
of Plymouth, Plymouth, UK
2
Collaboration for Leadership in Applied Health Research and Care, South
West Peninsula (PenCLAHRC), The National Institute for Health Research
(NIHR), Plymouth, UK
Full list of author information is available at the end of the article

© The Author(s). 2019 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0
International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and
reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to
the Creative Commons license, and indicate if changes were made. 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.
Mole et al. BMC Geriatrics (2019) 19:250 Page 2 of 10

Background interact with people living with dementia at home. Inter-

There are an estimated 50 million people living with de- pretative phenomenological analysis (IPA) was chosen as
mentia globally [1]. For those living with dementia at the research methodology. IPA seeks to examine, as far
home, family carers take on the responsibility of man- as is possible, the perceptions of the participant. How-
aging health, emotional and social needs. These can be- ever, the process also involves the interpretative activity
come more complex and demanding as the dementia of the researcher, otherwise known as ‘double hermen-
progresses, and can have profound impacts on the indi- eutic’. Therefore, in-depth interpretative accounts for a
vidual and their family [2]. small number of participants are presented when using
For someone living with dementia, nutritional status IPA, instead of a generalised account for a larger sample.
can be affected in many ways including changes in mem-
ory, motor skills, taste, and appetite and swallow func- Methods
tion [3, 4]. The presentation of symptoms will vary Study design
amongst individuals as the disease progresses, and may Each participant took part in one semi-structured inter-
also be dependent on dementia type (e.g. Alzheimer’s view between December 2017 and March 2018. As part
disease or vascular dementia) [5]. The initial identifica- of the interview, a vignette was used that had been spe-
tion and management of nutritional issues are often reli- cifically developed for this research. All participants were
ant upon the family carer. This is one element of care shown and read the same vignette, which outlined a fic-
amongst many others that an inexperienced carer may titious scenario of a husband caring for his wife with de-
have to consider, increasing the risk of elevated levels of mentia at home (see Additional file 1). The vignette had
burden and stress, which may impact upon the quality been piloted with a group of health care professionals
of care provided, as well as emotional wellbeing [6]. prior to interviews, to ensure internal validity. Vignettes
Carer surveys have indicated that there is a need for have been shown to be useful in eliciting awareness and
increased primary care support relating to the nutri- attitudes in health care research, as they offer a level of
tional needs and consequences associated with dementia depersonalisation allowing the interviewee to think be-
in those living at home [7]. Family carers are conscious yond their own professional circumstances [12]. The
about ‘doing the right thing’ when it comes to providing consolidated criteria for reporting qualitative research
nutritional care, however feel uncertain about the food (COREQ), was used during the design of this study [13].
choices they are making [8]. To reduce the ‘care-burden’
experienced by family caregivers, domiciliary home care Participants
support may be used, and can contribute to helping Following ethical approval from the University of
someone with dementia maintain an adequate nutri- Plymouth Faculty of Health and Human Sciences Re-
tional status whilst living at home. Best practice guide- search Ethics Committee (16/17–778), a variety of health
lines have been published in the UK to support care professionals and home care workers were purpos-
managers of home care agencies [9], however there is ively recruited from the lead author’s professional
limited literature that evaluates the nutritional care that network.
these agencies provide. There is also a paucity of studies To be eligible for inclusion participants were: health
examining the views and experiences of home care care professionals and home care workers residing in
workers, and other health care professionals who may South-West England, who had experience engaging with
interact with people living with dementia at home (e.g., people living with dementia at home. Written consent
general practitioner’s (GP’s), community social workers, was provided prior to interview, and verbal consent was
and community dietitians). also audio recorded.
The reason for the delayed identification of malnutri- Seven health care professionals and home care workers
tion risk and the inconsistent monitoring of nutritional volunteered to take part in the study with an average
status could be because some health care professionals duration in their profession of 8.9 years, and were pre-
perceive a lack of benefit to the patient (i.e. taking a ni- dominantly female (1 male, 6 female) (Table 1). This
hilistic view) [10]. However, the timely identification of sample size aligns with other IPA studies involving
nutritional issues, regular monitoring of nutritional sta- health care professionals, to provide a manageable num-
tus, and increased support and education for all types of ber of detailed individual accounts [14, 15]. This study
carers and health care professionals involved with people did not intend to generate theory, therefore theoretical
living with dementia at home are important factors, saturation (or data saturation) was not considered [16].
highlighted in a recent review of the literature [11].
The aim of this study was to understand the experi- Data collection
ences and perspectives relating to nutritional care of Participants were interviewed at their own home, at their
health care professionals and home care workers, who place of work (outside of working hours), or on
Mole et al. BMC Geriatrics (2019) 19:250 Page 3 of 10

Table 1 Participant demographics Authors’ perspectives

Profession Code Male/Female Time in profession LM led the interviews, transcription and analysis and
(M/F) (years) kept a reflective diary throughout the process. The re-
General Practitioner GP M 15 search team have clinical and research experience in the
Community Social Worker SW F 3 field of dementia and nutrition, and LM is a registered
Community Occupational OT F 3 dietitian. The impact of an existing professional relation-
Therapist ship between the interviewer and interviewee was taken
Community Dietitian CD F 15 into account during data analysis through the re-
Community Nurse CN F 11
searcher’s reflexive diary entries.
Care Worker 1 CW1 F 8
Care Worker 2 CW2 F 7 Results
Four superordinate themes were identified that brought
university premises according to participant preference. together the data from the seven participants (see
Interviews lasted between 20 and 39 min, and were Table 2). One theme (responsibility to care) was identi-
audio recorded and transcribed verbatim. An interview fied in all seven transcripts. However, three themes (in it
schedule was developed and piloted, and used for together [6/7 participants], practice restrained by policy
prompting where necessary (see Additional file 2). [5/7], and improving nutritional care [5/7]), although
Topics included exploring the nature of their role, their clearly identified in some transcripts, were not evident in
experiences of nutritional care in this group, and what all. The vignette offered the opportunity for participants
they felt would improve nutritional care for people living to explore their own feelings regarding a scenario which
with dementia at home. many had experienced in their professional practice.
Some of this insight contributed towards the themes,
however the response to the vignette is summarised
Analysis separately.
Data were analysed in accordance with an IPA method-
ology by LM using NVivo 11 [17] to aid coding and or-
ganise emergent themes. Each account was read and re- Theme one: responsibility to care
read, ensuring that any new ideas and insights were gen- This theme explores how the participants perceive the
erated [18], and semantic content and language use were role that they play in supporting people with dementia
explored. Connections across themes were then identi- living at home, and the responsibilities they feel they
fied before the next participant account was approached have to enable this. It examines the extended role that
and the themes that emerged from the previous case health care professionals and home care workers may
were ‘bracketed’ [14]. Once all accounts had been ana- have, and the attributes that participants believe are im-
lysed, patterns across accounts were investigated and portant for working with this population.
superordinate themes created that captured the shared Although the specific role of each health professional
experiences of the participants. Throughout analysis, differs, there was a commonality expressed by partici-
emergent and superordinate themes were discussed with pants linked to ensuring a safe environment and pro-
MH, BK and RA. This systematic approach ensured moting wellbeing. Often, this was assessed against an
traceability of the development of themes from partici- established framework or screening tool, such as the
pant’s original accounts. ‘Care Act’.

Table 2 Superordinate themes with sub-themes

Responsibility to care Practice restrained by policy In it together Improving nutritional care
• Care is a constant • Time is limited • Family carers need as much • Taking a problem-solving
• Dealing with dementia as a GP • The value and disvalue of other support approach
• Monitoring and auditing support services • How care workers can support • Opportunities for improvement
• Promoting an active role • Tensions and frustrations • Male carers cope better than • Meal delivery is not enough
• Responsibilities and measures • Resource Policy and Care females • Malnutrition management
• Role of the district nurse Provision Models • Nutritional care is everyone’s • Making it better
• The attributes you need to care for • Power removed responsibility • Generational changes in
someone with dementia • Assessments and Care Plans • Togetherness nutritional knowledge
• The extended role of health • A happy social environment • We are all in it together • Awareness vs. knowledge
professionals can’t be measured • Working with family caregivers
• The role of carers • Worry and concerns involved
• The role of the social worker with nutritional care
Mole et al. BMC Geriatrics (2019) 19:250 Page 4 of 10

‘Our function is that we'd go out, assess the person need to be protected really, especially with somebody
against the Care Act, which has quite clear eligibility with dementia that might take a long time to eat their
… Statutory-wise it would be safeguarding. We'd have meals. Some people even forget how to use a knife
a duty of care making sure that they're safe, well, and and fork, so you don't really want to be interrupting
at home if home is the best environment for them.’ that … You need a lot of patience, got to have
(SW) patience. If people haven't got patience, then you can't
support people if you haven't got patience with
All professionals felt a ‘responsibility to care’, and the dementia.’ (CN)
GP in particular ardently expressed the magnitude of
this responsibility.‘Oh my goodness! I'm basically
responsible for their whole care.’ (GP) Theme two: practice restrained by policy
This theme explores the impact that hierarchical influ-
Some professionals perceived their role as not limited to ences, such as policies and care provision models, had
their specialism, but recognised the importance of exer- upon the participants’ practice. It explores the issues
cising an extended role, especially as they may be the expressed regarding time constraints concerned with
only health care professional to have visited the person providing adequate nutritional care, and how other sup-
with dementia at home in a while. The community port services can be helpful or a hindrance. The level of
dietitian expressed how they would focus on nutrition, policy, models, assessments and care plans was an area
but also observe other health factors during a visit.‘It’s of focus for many participants, and resulted in feelings
nutrition but then also eyes. We're the eyes of - of tension and frustration. Some expressed feeling a dis-
Somebody might not have seen a GP for a long time solution of power, where senior management made all
or have seen nobody for a long time. You're just decisions regarding care provision. The inability to ef-
looking around and making a judgment generally … fectively measure important outcomes, such as ensuring
For example, one of the questions I would routinely a happy, and social environment, was seen as a limita-
ask is what's your skin like? Are your pressure areas tion of the health care system, which was perceived as
intact and if there's any concerns about that then it's a being focused only on measurable outcomes.
case of okay who is seeing that? Does anybody know Issues with time constraints was mentioned by a few par-
about it?’ (CD) ticipants, however the home care workers were most sensi-
tive to how time can impact upon their role in the context
Home care workers are amongst the professionals who of nutritional care for the individual with dementia.
may visit people at home on a regular basis, and describe
their role as encouraging enablement and promoting an ‘As a carer, I know that sometimes you only have a
active role for the individual with dementia. This was certain amount of time to go in. A lunch call could be
particularly relevant when discussing food preparation, half an hour. In that time with someone with dementia
and one care worker described how important they felt you might have given them so many options and they
it was to involve the person with dementia in this choose one and then they decide they don't want that...
process. This was, however, caveated by the recurring It's just unfortunate that support workers are only given
issue of time constraints with delivering care. a certain amount of time and the people that dish out
the time will be sitting there saying well hold on a
‘I just think that with dementia, to get their minds minute, she's got dementia, she's got carers three times
working as well and actively doing something, I think a day. That's where ours stops. Well it shouldn't. That's
cooking - maybe someone could go in and cook twice not a duty of care. Duty of care is to promote
a week with them and make meals up that can go in independent living at home.’ (CW1)
the freezer … So getting them actively involved, you'll
see a significant difference, you would, because their Dementia was expressed by some participants as a ‘social
mind's - they're using their mind rather than letting it care issue’, and one which requires multidisciplinary in-
seize up.’ (CW1) put. Memory café’s (which support people with demen-
tia and their family members in a safe, social setting)
Some participants discussed the important attributes were viewed as a valuable resource by the GP, and one
that they feel are required when working with someone which differs to that of formal health provision services,
with dementia. ‘Patience’ was cited as one of these attri- such as memory clinics.
butes, and the community nurse described how this was
important if visiting a patient around mealtimes.‘We try ‘Memory cafes are very popular because they're not
not to do our visits around mealtimes, because they them and us, type of thing. It's very - they're very level
Mole et al. BMC Geriatrics (2019) 19:250 Page 5 of 10

playing fields. Whereas, when you go to the memory may cope better than others, and how participants feel
clinic, the consultant, the specialist, he's them and they provide help and support with regards to nutri-
we're the patient.’ (GP) tional care. Nutritional care is perceived by many partici-
pants as being a collective responsibility, in which
Many participants described their roles framed within everyone can play a part and it is recognised how health
referral policies and procedures. This was deemed neces- care professionals, home care workers and family carers
sary to manage a large number of referrals with limited need to work together.
resources, but there were challenges associated with this, The recognition of how family carers cope with pro-
particularly in the context of changing strategies to pre- viding nutritional care for someone living with dementia
vent hospital admissions. at home was noted by a home care worker in response
to the vignette. The requirement for there to be as much
‘We would put an individualised nutritional care plan support for the family carer as for the person with de-
in place and then we would monitor that. We aren't mentia was also noted.
able to monitor as closely as we would like because of
the level of the dietetic service … I'm a bit biased, but ‘I think that must be the hardest bit is the guilt, that
I think we need more dietitians.’ (CD) they have the mixed emotions of what they must go
through. They must go through so much frustration.
The tension between the cost of nutritional care They must get to the point where they get so
provision and client requirements was perceived as an exasperated by it all. That would be perfectly what
issue in social care. Many clients will be supported by you'd expect. I think he'd need just as much support
meal delivery services. Although a cost-effective option, in a different way.’ (CW2)
social workers are aware that this does not meet many
of their client’s needs, who would perhaps benefit from Male family carers were perceived by one participant to
increased carer support during mealtimes. cope better than females. The occupational therapist
who perceived this suggested this was due to females
‘It's really quite hard, because of the budgets and stuff having carried out a ‘caring’ role for the family through-
like that, they want to cut down on care. So, when we out their lives, and may feel more of a burden as a result
put care packages in, it has to be timed. They don't like of caring for a male spouse with dementia. Male family
us putting in carers to cook a meal. So, instead, they carers may take to unfamiliar tasks such as cooking and
will say Community Meals or microwave meals.’ (SW) shopping with an organised and methodical approach.

Measured outcomes and targets are not reflective of the ‘Just the change in the role is a really difficult thing
benefits of social interaction, as perceived by one of the for a carer to take on, but I personally always think
home care workers. They serve a purpose, however the that men manage it slightly better … maybe the
importance of creating an environment where people are husband has not had to do so much of that during
able to interact to promote improved wellbeing, may pro- their lifespan and then, although it's difficult, seems to
duce positive yet unmeasurable outcomes. This insight take it a lot better and although it's maybe unfamiliar
does not align with a time-based model of care provision. tasks with cooking and things like that, they're very
organised.’ (OT)
‘I don’t think we can ever underestimate social
interaction. I think there is so much now based on The way in which home care workers support family
outcomes, but we don’t actually appreciate enough just carers was explored, in response to the vignette. Home
socially how important that is … we have targets and of care workers can be a source of ‘strength’ for the family
course we can always have things to work to, but I think carer if they are struggling, and provide structure and
the fact that we can provide an environment to come in support. They can be limited to how they support family
and socialise and be happy, because obviously all those carers, and are aware of providing advice but not dictat-
things affect your mental health, your wellbeing.’ (CW2) ing how nutritional care should be delivered.

‘He's going to get his strength from her, and maybe

Theme three: in it together if he watched what she did with him, he might get
This theme explores how participants recognise the im- an idea of how they can get in a routine or
portance of the partnership that is required between prompting her to eat her meals … Or maybe [he]
themselves and family carers of people living with de- just needs to be sat down and said look, we can do
mentia at home. It describes how some family carers this, or get a food plan together … You're limited
Mole et al. BMC Geriatrics (2019) 19:250 Page 6 of 10

to what you can say. You can advise them but you awareness at that point, that could be helpful in the
can't tell them.’ (CW1) future.’ (GP)

It was important to the community dietitian that nutri- The level of nutritional knowledge amongst participants
tional care was a shared responsibility. Although dieti- varied. Aside from the community dietitian (‘the experts
tians can be key in driving positive change towards in the nutrition side of things’), participants felt that they
improving someone living with dementia’s nutritional lacked knowledge in the area of nutritional care for
status, they are not solely responsible. Other health care people living with dementia at home. Many felt that
professionals and family carers have a part to play in more training in this area would provide the knowledge
keeping someone well for as long as possible. required to identify nutritional issues and take appropri-
ate action.
‘Also it's not just a dietitian's responsibility, I should say,
in that everybody who's come into contact there; so the ‘No. I've probably got no - zero knowledge of
carers and any other health care professionals involved, nutritional care in that sense … Are the microwave
can actually start to put in some steps to support them meals really that bad? I don't - we don't know. I don't
other than it just being the dietitian.’ (CD) know whether that - they're bad or not bad.’ (SW)

The concept of shared responsibility for nutritional care

was explored further by another participant, who dis- ‘I think education for everybody because there's quite
cussed the importance of family carers and people with often lots and lots of people involved with a person …
dementia doing things ‘together’ that would contribute it would be just be a bonus to have it because we are
to improved nutritional care, such as shopping. aware, we realise that food and drink is really
important and that it's an issue, but I wouldn't say
‘But they could make a shopping list; they can go that we actually have the right knowledge to maybe
shopping together. If she's putting loads of stuff in the do what we need to do about it.’ (OT)
basket, in her mind she's saying oh I like that, I like
the thought of having that. So maybe having The age demographic of home care workers was consid-
something that she likes, that she's going to eat, but as ered an issue in the context of nutritional knowledge for
long as it's got the nutrition for her, I don't think it's one participant. Differences in school education over the
that bad.’ (CW1) years regarding cooking and nutrition was cited as the
reason for this.

Theme four: improving nutritional care ‘We have young members of staff coming in now that
Some participants explored how they felt nutritional care have absolutely no idea about nutrition and about - I
could be improved for people living with dementia at think it's the schools. I think the schools need
home. There was a recurring theme of the importance overhauling on it, I really do.’ (CW2)
of increasing awareness of nutritional issues and more
training in nutritional care for health care professionals, The efficacy of meal-delivery services were raised by
home care workers and family carers. For home care some participants. Most were dubious regarding their
workers, a ‘generational knowledge gap’ regarding nutri- value, particularly with regards to the method of deliv-
tional care is thought to have an impact for clients with ery. Participants felt that recipients of the meals were left
dementia living at home. The perceived issues with meal confused and with little guidance regarding the meals,
delivery services were referenced by a few participants, which inevitably resulted in them not being consumed.
but also the benefits that they can offer to both family
carers and people with dementia. ‘ … all of their hot meals with big bold stickers on the
Raising awareness of nutritional issues associated with front saying please eat immediately do not freeze. You
dementia for patients and carers at point of diagnosis have a look in their freezer and there's about 20 of
were recognised by one participant to be beneficial for these meals. The alarm bells start ringing.’ (CD)
the future. Family carers or the person with dementia
may then notice nutritional issues before they escalate.
‘They just turn up. You might have somebody by
‘Step one is at the point of diagnosis and at that point themselves or whatever and they turn up, they give
we hope we've diagnosed them early enough where them the meal, and then they leave, literally, at the
nutritional issues won't be a problem. But, if we raise door. That causes all sorts of problems.’ (SW)
Mole et al. BMC Geriatrics (2019) 19:250 Page 7 of 10

Carers being able to spend time cooking with people living of acceptance at some point that you aren’t going to
with dementia at home was suggested by participants. see that person again, but when that person is
This would provide an enjoyable activity for the person disappearing in front of you, I think that's so tough.’
with dementia, and increase the likelihood of meal con- (CW2)
sumption, therefore improving nutritional intake.
As well as a focus on the health status of the person with
‘I'm quite sure that carers in the community that'll be dementia (‘there are red flags coming out around nutri-
commissioned would love to cook somebody a meal. tion’ CD), the health of the family carer was also an area
I'm sure they would, and I'm sure that's a problem, and of concern for participants. This ranged from social and
we would love them to cook the meal. But that's the - emotional support, to medical support.
it's coming from the budget holders.’ (SW)
‘Obviously he's not very aware of the whole situation,
is he? He knows that his wife's got this dementia and
‘I just think that with dementia, to get their minds he doesn't actually know how to deal with it because
working as well and actively doing something, I think she's always been the actual role; she's looked after
cooking - maybe someone could go in and cook twice him. So now he just needs a little bit of backing up
a week with them and make meals up that can go in really doesn't he?’ (CW1)
the freezer.’ (CW1)

‘Then, of course, we might want to look at him as

Reactions to the vignette well. What medication and support might he want?’
The vignette offered participants the opportunity to reflect (GP)
on a scenario, based on a real-life situation (see Additional
file 1). The vignette describes a husband’s experience Participants explored how home care workers could add
whilst caring for his wife who has Alzheimer’s Disease. value by offering practical support. This ranged from
These include having to take over the cooking duties, con- providing reassurance, to helping the family carer plan
cerns regarding eating adequately, weight loss, and the im- meals for the week.
pact of memory loss. They were able to then relate their
own experiences to the scenario, as well as how they felt ‘So if they had someone come in and they taught
about the situation. Participants recognised the scenario, them about what does she like to eat, how does she
and many accepted that it was something they see fre- like to cook it, because it's guaranteed as soon as she
quently in their professional practice. gets in that kitchen she'll be saying oh I used to do it
this way … Or maybe he just needs to be sat down
‘It's kind of a familiar situation. It is something that and said look, we can do this, or get a food plan
we come across quite often.’ (OT) together.’ (CW1)

‘Yeah, that is sad, but yeah, totally understand where A range of solutions were offered by participants to help
he's coming from and I've seen that.’ (CN) the couple. These included hot meal delivery to take the
onus off the family carer, and modelling appropriate be-
‘That's the kind of patient we see on a daily/weekly haviours like eating meals together.
basis. Obviously really tough situation isn't it.’ (CD)
‘Depending on where they live … we can have hot
Participants sympathised with the family carer’s situation meals delivered; quite a lot of villagers, like the local
in the scenario, and were empathetic towards the change pub would deliver a hot meal and things like that. So I'd
in his role, as well as how his wife’s dementia diagnosis probably try to look in to what's available in their area.
may be affecting him. If he's concerned about whether he's cooking the right
things and things like that, and also just to take a bit off
‘In terms of her husband Peter, it's been a massive life of him, if he's not used to having to cook. Making sure
change for him and his feelings and thoughts for the that they've got the nutritious meals coming in would
changing role; a quite devastating time for him really.’ probably be something that I'd want to prioritise.’ (OT)
(CD)

‘I think the bereavement, the grief, it must be so hard. ‘Sometimes if you sit down and eat with someone,
If somebody dies and you have to come to some kind they will eat as well. It's what they can see, not feel.
Mole et al. BMC Geriatrics (2019) 19:250 Page 8 of 10

She might be thinking oh I haven't eaten that so he's effectiveness of a care plan delivered by memory clinics,
eaten, I'll eat. It's what you do … that makes a and developed specifically for patients with Alzheimer’s
difference.’ (CW1) Disease showed no difference in functional decline com-
pared to usual care [26]. Care plans should have a
broader focus, particularly as many people living with
Discussion dementia also have other comorbid medical conditions
The aim of this study was to understand the experiences [27]. Nutritional care should be an integral component
and perceptions of health care professionals and home of personalised care plans for people living with demen-
care workers who interact with people living with de- tia at home, however more research is required concern-
mentia at home relating to nutritional care. To the best ing reducing the time burden of the care planning
of our knowledge, these findings contribute the first de- process for primary care practitioners and patients [28].
tailed interpretative phenomenological account of such A potential remedy for this issue is to allow the patient
experiences. The personal accounts highlight four super- and family carer to derive their own meaningful
ordinate themes central to this experience. outcomes.
Health care professionals and home care workers feel Participants felt that many issues regarding the effect-
that they have a responsibility towards the health of iveness of nutritional care were as a result of limited
someone living at home with dementia. This was termed time available for home care workers per visit. People
a ‘duty of care’ by some participants, who viewed it as an with dementia may experience difficulties planning
integral component of their professional role. This is im- mealtimes, and may miss or leave meals if left unsup-
portant because health care, particularly nutritional care, ported [29]. Eating meals with others, playing back-
often involves uncertainty and risk for individuals who ground music, and allowing longer mealtimes may help,
are reliant on the competence of the health care profes- however more research is required to test such interven-
sional [19]. Trust within health care relationships is tions, and whether home care workers could facilitate
thought to be reliant on health care professionals being them [30]. Meal delivery was a solution proposed by
non-judgemental listeners and ‘acting as a mirror for some participants, however this was sometimes viewed
family strengths’ [20]. Surveys have found that older as a sub-standard replacement to an extended home care
people in the UK feel that they are not involved in the visit. Delivered meals have been found to improve nutri-
wider home care system, which they find difficult to tional status and dietary intake in older adults (without a
understand, and does not make the effort required to diagnosis of dementia) who reside in their own home
tailor care to their health needs [21]. Future service de- [31, 32]. Despite this, some studies have found that this
velopment must recognise that health systems are com- group tend to associate negative meanings with conveni-
plex, and require integration of trust to enable successful ence food [33]. There is a paucity of studies exploring
outcomes [22]. the effects of delivered meals for people living with de-
It has been demonstrated that reductions in health mentia at home.
and social care resource in England, UK are associated Participants were unanimous in their view that health
with increased mortality [23]. It is therefore important care professionals and home care workers required more
to ensure that all health care professionals and home training and support regarding effective nutritional care.
care workers who visit people in their own homes, are This view aligns with a recent survey that found that
able to take responsibility to identify potential health 86% of home care workers in the UK believe that de-
risks that may lead to deterioration of health, such as mentia training would help them provide better care
malnutrition. More focus is required on promoting hol- [34]. In the care home setting, studies have explored the
istic and non-siloed training and working approaches to importance of considering the meaning of the mealtime
care, particularly for those with complex long-term con- experience, and how residents can be empowered to
ditions [24]. make food and drink choices [35, 36]. More research is
Participants discussed the use of assessments and care required into how similar approaches may be used
plans, either conducting these themselves, or using them within the ‘own-home’ setting, and with people living
as a reference to ensure they understood the person liv- with dementia. Home care workers may be best placed
ing with dementia’s requirements. Care plans form an to facilitate these approaches, however the complexities
important part of a patient’s health journey, particularly of their role and the training they require is under-
in long-term conditions, and provide an opportunity for researched [37].
health services to measure outcomes. However, care
plans that are focused on a chronic condition may not Strengths and limitations
factor in the patient’s or professionals’ wider perspec- This is the first study to report on the experiences and
tives on goals or behaviour changes [25]. A trial of the perceptions of health care professionals and home care
Mole et al. BMC Geriatrics (2019) 19:250 Page 9 of 10

workers regarding nutritional care for people living with Additional file 2: Interview schedule used during semi-structured
dementia at home. Using a vignette during the semi- interviews with health care professionals and home care workers (PDF
structured interview allowed participants to think cre- 190 kb)
atively and provide responses that could be compared
between professions. However, participants were asked Abbreviations
to respond to the vignette from their own perspectives, CD: Community Dietitian; CLAHRC: Collaboration for Leadership in Applied
Health Research and Care CN Community Nurse; COREQ: Consolidated
which may have resulted in participants giving answers Criteria for Reporting Qualitative research; CW: Care Worker; GP: General
that where expected of their profession, rather than what Practitioner; IPA: Interpretative Phenomenological Analysis; NIHR: National
they would do themselves. Participants were recruited Institute for Health Research; OT: Occupational Therapist; SW: Social Worker

through the lead researcher’s professional networks,

Acknowledgements
which may have affected the interview dynamics and re- The authors would like to acknowledge the time and involvement of
sults. This was mitigated by ensuring transparency of participants.
the existing relationships between interviewer and inter-
Authors’ contributions
viewee, and by keeping a reflexive diary throughout the LM, MH, BK and RA conceived and designed the study. LM conducted the
study. The diary allowed the lead researcher to actively interviews and conducted initial data analysis, including interpretation. LM,
explore how the information shared by participants im- MH, BK, and RA were involved in finalising data analysis and interpretation,
drafting the article and critical revision of the article. All authors gave final
pacted upon her own pre-existing beliefs and knowledge approval of the version to be published.
in order to understand the phenomenon of interest
which was how health care professionals and home care Funding
workers provide nutritional care. This research was funded by the National Institute for Health Research (NIHR)
Collaboration for Leadership in Applied Health Research and Care (CLAHRC)
South West Peninsula, now recommissioned as NIHR Applied Research
Collaboration (ARC) South West Peninsula. The views expressed are those of
Conclusion the authors and not necessarily those of the NHS, the NIHR or the
This study explored the experiences of health care pro- Department of Health and Social Care.

fessionals and home care workers when providing nutri-

Availability of data and materials
tional care to people living with dementia at home. This The datasets generated and analysed during the current study are not
group felt a sense of responsibility to ensure that people publicly available due to them containing personal and identifiable
living with dementia received adequate care. The family participant information.

caregiver was recognised by participants as needing sup-

Ethics approval and consent to participate
port. However, challenges to providing effective nutri- Ethical approval was given by the University of Plymouth Faculty of Health
tional care and support include limited time to spend and Human Sciences Research Ethics Committee (16/17–778) for this study.
Written consent was provided by participants prior to interview, and verbal
with individuals, knowledge of appropriate food and
consent was also audio recorded at the beginning of each interview.
drink choices, and decisions to replace carer support
with meal delivery to reduce cost. The health care pro- Consent for publication
fessionals and home care workers in this study recog- Not applicable.
nised that working together as a team can improve care
Competing interests
outcomes. Ideas for improvements focus on raising The authors declare that they have no competing interests.
awareness of nutritional needs and developing training
aids regarding nutritional care and dementia. The find- Author details
1
Institute of Health and Community, School of Health Professions, University
ings reinforce the importance of ensuring health care of Plymouth, Plymouth, UK. 2Collaboration for Leadership in Applied Health
professionals and home care workers are provided with Research and Care, South West Peninsula (PenCLAHRC), The National
adequate training regarding identifying nutritional risks, Institute for Health Research (NIHR), Plymouth, UK. 3School of Nursing and
Midwifery, University of Plymouth, Plymouth, UK. 4Centre for Health and
helping family carers make appropriate food and drink Social Care Innovation, University of Plymouth: an affiliated centre of the
choices, and preventing the risk of malnutrition in the Joanna Briggs Institute, Plymouth, UK.
dyad. Future research should focus on the efficacy of in-
Received: 18 May 2019 Accepted: 4 September 2019
terventions to improve nutritional care from the health
care professional and home care worker’s perspective, as
‘it’s what you do that makes a difference’. References
1. World Health Organisation: Dementia Factsheet. In.; 2017.
2. Fauth EB, Gibbons A. Which behavioral and psychological symptoms of
dementia are the most problematic? Variability by prevalence, intensity,
Additional files distress ratings, and associations with caregiver depressive symptoms.
International Journal of Geriatric Psychiatry. 2014;29(3):263–71.
3. Ikeda M, Brown J, Holland AJ, Fukuhara R, Hodges JR. Changes in appetite,
Additional file 1: Vignette used during semi-structured interviews with
health care professionals and home care workers (PDF 101 kb) food preference, and eating habits in frontotemporal dementia and
Alzheimer's disease. J Neurol Neurosurg Psychiatry. 2002;73(4):371–6.
Mole et al. BMC Geriatrics (2019) 19:250 Page 10 of 10

4. Kai K, Hashimoto M, Amano K, Tanaka H, Fukuhara R, Ikeda M. Relationship and drinking well IN dementiA (EDWINA) systematic review. BMC Geriatr.
between eating disturbance and dementia severity in patients with 2016;16(1):1.
Alzheimer’s disease. PLoS One. 2015;10(8):e0133666. 31. Wright L, Vance L, Sudduth C, Epps JB. The impact of a home-delivered
5. van der Linde RM, Dening T, Matthews FE, Brayne C. Grouping of meal program on nutritional risk, dietary intake, food security, loneliness,
behavioural and psychological symptoms of dementia. International Journal and social well-being. Journal of Nutrition in Gerontology and Geriatrics.
of Geriatric Psychiatry. 2014;29(6):562–8. 2015;34(2):218–27.
6. Brodaty H, Donkin M. Family caregivers of people with dementia. Dialogues 32. Zhu H, An R. Impact of home-delivered meal programs on diet and
Clin Neurosci. 2009;11(2):217–28. nutrition among older adults: a review. Nutr Health. 2013;22(2):89–103.
7. Alzheimer's Society: Challenges facing primary carers of people with 33. Peura-Kapanen L, Jallinoja P, Kaarakainen M. Acceptability of convenience
dementia: Opportunities for research. In.; 2012. food among older people. SAGE Open. 2017;7(1):1–11.
8. Mole L, Kent B, Hickson M, Abbott R: Family carers’ experiences of 34. Carter D: Fix Dementia Care: Homecare. In.; 2016.
nutritional care for people living with dementia at home: An interpretative 35. Murphy JL, Holmes J, Brooks C. Nutrition and dementia care: developing an
phenomenological analysis. Dementia, forthcoming 2019. evidence-based model for nutritional care in nursing homes. BMC Geriatr.
9. Skills for Care: Better domiciliary care for people with dementia: Best 2017;17:55.
practice case studies from domiciliary care employers developing their 36. Watkins R, Goodwin VA, Abbott RA, Hall A, Tarrant M. Exploring residents’
workforces to support people with dementia. In. Leeds; 2014. experiences of mealtimes in care homes: a qualitative interview study. BMC
10. Iliffe S, Jain P, Wong G, Lefford F, Warner A, Gupta S, Kingston A, Kennedy Geriatr. 2017;17(1):141.
H. Dementia diagnosis in primary care: thinking outside the educational 37. D'Astous V, Abrams R, Vandrevala T, Samsi K, Manthorpe J: Gaps in
box. Aging Health. 2009;5(1):51–9. understanding the experiences of homecare workers providing care for
11. Mole L, Kent B, Abbott R, Wood C, Hickson M: The nutritional care of people people with dementia up to the end of life: A systematic review. Dementia
living with dementia at home: A scoping review. Health Soc Care (London, England) 2017:1471301217699354.
Community 2018:n/a-n/a.
12. Schoenberg NE, Ravdal H. Using vignettes in awareness and attitudinal
research. Int J Soc Res Methodol. 2000;3(1):63–74.
Publisher’s Note
Springer Nature remains neutral with regard to jurisdictional claims in
13. Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative
published maps and institutional affiliations.
research (COREQ): a 32-item checklist for interviews and focus groups. Int J
Qual Health Care. 2007;19(6):349–57.
14. Smith JA, Flowers P, Larkin M. Interpretative phenomenological analysis :
theory, method and research. London: SAGE; 2009.
15. Jarman M, Smith JA, Walsh SUE. The psychological Battle for control: a
qualitative study of health-care Professionals' understandings of the
treatment of anorexia nervosa. J Community Appl Soc Psychol. 1997;7(2):
137–52.
16. Pietkiewicz I, Smith JA. A practical guide to using interpretative
phenomenological analysis in qualitative research psychology. Psychol J.
2014;20(1):7–14.
17. QSR International: NVivo 11. In., vol. Pro, 11.4.1.1064 (64-bit) edn; 2017.
18. Hunt D, Smith JA. The personal experience of carers of stroke survivors: an
interpretative phenomenological analysis. Disabil Rehabil. 2004;26(16):1000–11.
19. Allinson M, Chaar B: How to build and maintain trust with patients. In: The
Pharmaceutical Journal. vol. 297; 2016.
20. Robinson CA. Trust, health care relationships, and chronic illness: a
theoretical coalescence. Global Qualitative Nursing Research. 2016;3.
21. Sykes W, Groom C. Older people’s experiences of home care in England. In.
Equality and Human Rights Commission: Manchester; 2011.
22. Gilson L. Trust and the development of health care as a social institution.
Soc Sci Med. 2003;56(7):1453–68.
23. Watkins J, Wulaningsih W, Da Zhou C, Marshall DC, Sylianteng GDC, Dela
Rosa PG, Miguel VA, Raine R, King LP, Maruthappu M. Effects of health and
social care spending constraints on mortality in England: a time trend
analysis. BMJ Open. 2017;7(11):e017722.
24. Burger S-A, Hay H, Casanas i Comabella C, Poots A, Perris A. Exploring
education and training in relation to older people's health and social care.
In. Dunhill Medical Trust: Oxford, UK; 2018.
25. Burt J, Rick J, Blakeman T, Protheroe J, Roland M, Bower P. Care plans and
care planning in long term conditions: a conceptual model. Primary health
care research and development. 2014;15(4):342–54.
26. Nourhashemi F, Andrieu S, Gillette-Guyonnet S, Giraudeau B, Cantet C,
Coley N, Vellas B. Effectiveness of a specific care plan in patients with
Alzheimer’s disease: cluster randomised trial (PLASA study). BMJ. 2010;340.
27. Bunn F, Burn A-M, Goodman C, Robinson L, Rait G, Norton S, Bennett H,
Poole M, Schoeman J, Brayne C: Comorbidity and dementia: a mixed-
method study on improving health care for people with dementia
(CoDem). Health Services and Delivery Research 2016, 4(8).
28. Edwards ST, Dorr DA, Landon BE. Can personalized care planning improve
primary care? JAMA. 2017;318(1):25–6.
29. Nygård L, Johansson M. The experience and Management of Temporality in
five cases of dementia. Scand J Occup Ther. 2001;8(2):85–95.
30. Bunn DK, Abdelhamid A, Copley M, Cowap V, Dickinson A, Howe A, Killett
A, Poland F, Potter JF, Richardson K, et al. Effectiveness of interventions to
indirectly support food and drink intake in people with dementia: eating