Received: 21 September 2019 

|
  Revised: 2 December 2019 
|  Accepted: 9 December 2019

DOI: 10.1111/ajag.12765

REVIEW ARTICLE

Interventions supporting caregiver readiness when caring for

patients with dementia following discharge home: A mixed-
methods systematic review

Elizabeth Pritchard1,2   | Amy Cussen3  | Veronica Delafosse4   | Miriam Swift3  |

Laura Jolliffe3   | Harriet Yeates3,5

1
Occupational Therapy Department, Alfred
Health, Prahran, Victoria, Australia
Abstract
2
Monash University, Melbourne, Victoria, Objective: To explore programs and information provided to caregivers of inpatients
Australia with dementia to assist with readiness to provide care following discharge.
3
Occupational Therapy Department, Alfred Methods: A mixed-methods systematic review with meta-analysis was conducted.
Health, Caulfield, Victoria, Australia
4
Search terms included dementia, inpatient, caregiver, anxiety, discharge and
Caulfield Hospital Library Services,
Alfred Health, Caulfield, Victoria, Australia
counselling.
5
Occupational Therapy Department, Results: The search yielded 1938 studies (six databases), 13 met the inclusion cri-
St Vincent’s Health, Fitzroy, Victoria, teria. Meta-analysis showed no statistically significant changes in anxiety, depres-
Australia
sion, burden or quality of life 3 months postintervention. Three emergent qualitative
Correspondence themes for staff consideration were: understanding personal characteristics of both
Elizabeth Pritchard, Monash University, patient and caregiver; presenting an inclusive organisational culture; and providing
553 Saint Kilda Road, Melbourne 3004
appropriate information at all stages of admission. A Model of Caregiver Readiness
Victoria, Australia.
Email: Pritchard.ek@gmail.com was created from the qualitative results.
Conclusion: The programs did not significantly decrease the outcomes measured.
However, caregivers identified that inclusion at all stages during hospital admission
was a vital factor to reduce stress and increase caregiver readiness.

KEYWORDS
adult, caregivers, dementia, patient discharge, inpatients

1  |   IN T RO D U C T ION reduced QOL.3,5 People with dementia who are hospitalised

Dementia affects approximately 50 million people worldwide,
with annual care-related costs estimated up to $AUD1200
billion.1 Many people with dementia live in the community
with the majority of care provided by family caregivers.1,2
As a person's dementia progresses, with lessening cogni-
tive and physical function, there is a reduction in commu-
nity participation and quality of life (QOL).2,3 For some, this
loss of independence requires primary caregivers to increase
care responsibilities.4 There are acknowledged psychosocial
implications in performing a caregiver role, which include
increased levels of anxiety, depression, social isolation and
are more likely to have prolonged or repeated hospital stays
and higher levels of need on discharge.2,6 As a result, the
caregiver needs to feel ready to meet these increased care
levels.4,6,7 Caregivers often find this adjustment difficult and
report a lack of preparedness or readiness for how to support
the person with dementia as they transition to home.4
Health professional teams work with both inpatients with
dementia and their caregiver to optimise function, promote
participation and identify ways to maintain QOL.8,9 There
is limited evidence regarding the efficacy of interventions
to increase caregiver readiness, and health professionals are
mainly guided by clinical experience. There is no widely

Australas J Ageing. 2020;00:1–12. wileyonlinelibrary.com/journal/ajag |

© 2020 AJA Inc.     1
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2       PRITCHARD et al.
accepted definition of caregiver readiness; however, it has
been described as incorporating four stages, precontempla-
tion, contemplation, preparation and action.10 It can also be
influenced by other factors such as personal, physical and
emotional.11 The caregiver and patients’ ability to cope with
the transition home encompasses their level of function and
the caregiver's ability to manage worry, handle demands and
carry out the required aspects of assistance.11 The coping re-
sponse from both the caregiver and the person living with
dementia is intertwined, and one can exacerbate or positively
impact the other.12
We have defined readiness as the caregivers' perception of
being ready to cope with and manage the care needs of the
patient following hospital discharge. Understanding how to
address the needs of the caregiver during the transition from
hospital to home to increase their ability to cope with the
transition home is critical for health professionals to ensure
the caregiver: (a) is equipped to meet new care needs; (b)
feels skilled to complete care tasks; and (c) feels supported
by the health professional team.
This mixed-methods systematic review explored the ef-
fectiveness of interventions provided to caregivers within a
hospital setting, to maximise caregiver readiness to support
successful discharge home for a person with dementia. The
secondary objective was to understand the caregiver's expe-
rience of what resources or support was important to receive
in hospital prior to discharge home, in order to enhance their
readiness to cope with the role of caregiver.
The research questions were as follows:
• What programs occur in hospital to assist caregiver readi-
ness for discharge home?
• What caregiver outcomes are reported?
• What resources and support are important for caregivers to
receive from staff in the hospital setting to promote readi-
ness for discharge?
2  | METHOD
This systematic review was conducted according to the
Preferred Reporting Items for Systematic Reviews and
Meta-analysis.13
2.1  |  Search strategy
Six databases were searched: MEDLINE, Cochrane
Database of Systematic Reviews, Embase, EmCare,
CINAHL and OTSeeker (14 May 2018) (Appendix 1). The
PICO model was employed in consultation with a medical
librarian and included the following: Population terms of
dementia, caregivers, inpatients, hospitalisation, home care;
Practice Impact
There is a need for health professionals to consider
how they can support readiness of the caregiver of
inpatients with dementia to undertake their role fol-
lowing discharge. This may include more effective
and timely information, addressing staff attitudes,
and consideration of caregivers’ psychological re-
sponses to the situation.
Interventions including social support, counselling, occu-
pational therapy, anxiety, grief, frustration, non-pharmaco-
logical treatment; neither Comparator nor Outcomes were
specifically searched but were identified for data extraction
(Appendix 1).
Inclusion criteria were as follows: Inpatient adults with
dementia, informal carer/caregiver, programs to support
readiness to care for the person with dementia to return home,
and returning to home from hospital. Full-text peer-reviewed
studies were required. Articles were excluded if patients had
delirium only (as this could be precipitated by health condi-
tions other than dementia), were in the emergency depart-
ment, had palliative care, had a paid caregiver only or were
discharged to rehabilitation or a residential facility. Only pa-
pers in English were included, and there was no restriction
on year. Two reviewers independently screened titles and
abstracts, then full text to determine article inclusion. Any
disagreements were discussed with a third researcher to reach
consensus.14 The review was registered through Prospero
(CRD42017058756 https​://www.crd.york.ac.uk/prosp​ero/
displ​ay_record.php?Recor​dID=58756​).
2.2  |  Risk of bias assessment (quality
appraisal)
Risk of bias was assessed by two independent reviewers using
the appropriate critical appraisal tool for the study design.15
Any disagreements were adjudicated by a third author. Since
the number of questions on each checklist varied,8-13 the final
scores were calculated as a percentage to allow for cross-
study comparison. A minimum score of 50% was set as a
level of quality for the study to be included in the quantitative
analysis. No minimal quality score was set for inclusion in
the thematic analysis.
2.3  |  Data extraction
Quantitative and qualitative data were extracted and col-
lated. Data were cross-checked by a second reviewer.
PRITCHARD et al.
Extracted data included study design, population, context,
intervention(s) and outcome(s) directly related to review
questions. If more than one paper presented the same
study, these were merged and reported as a single study as
per Cochrane guidelines.14
2.4  | Meta-analysis
  
   3
|
2.5  |  Qualitative analysis
Qualitative data were analysed using a thematic analysis
framework approach.17 This used a ‘textual approach’ as a
way to explain the findings and included the development
of a theory, preliminary synthesis, exploring the relation-
ship between the themes and assessing the quality of the
data.17

Where two or more studies reported the same outcome, data

were pooled in statistical meta-analysis using RevMan.16
Effect sizes were expressed as odds ratios (for categorical
data) and standardised mean differences (for continuous
data), and their 95% confidence intervals were calculated.
Heterogeneity was statistically assessed using the chi-
square and also explored using subgroup analyses based
on the different quantitative study designs included in this
review. When different time frames were reported, the
most common one from baseline was used. Where statisti-
cal pooling was not possible, the findings were presented
in narrative form.
2.6  |  Data synthesis
Following separate analysis of quantitative and qualitative
data, findings were aggregated using a segregated synthesis
approach by four reviewers.15 This method identifies whether
the qualitative findings either support (confirmation) or con-
tradict (refutation) the quantitative evidence, or whether both
sets of data add to the other (compliment).15 The assumptions
are as follows: (a) both quantitative and qualitative studies
are different and need to be treated as such; (b) they are read-
ily distinguished from each other; (c) the differences between

F I G U R E 1   Flow chart of studies via

the PRISMA guidelines
Identification

Records identified through Additional records identified

database searching through other sources
(n = 1938) (n = 0)

Records after duplicates removed

(n = 1776)
Screening

Records screened Records excluded

(n = 1776) (n = 1558)

Full-text articles assessed Full-text articles excluded,

for eligibility with reasons
Eligibility

(n = 218) (n = 205)

Community setting
(n = 118)
Studies included in Grey literature
qualitative synthesis (n = 25)
(n = 7) Rehab/aged care
(n = 22)
Not carers
Included

(n = 20)
Studies included in Incorrect diagnosis
quantitative synthesis (n = 9)
(meta-analysis) Missed duplicates
(n = 6) (n = 5)
Not a primary study
(n = 4)
Non-English
(n = 2)
TABLE 1  Characteristics of studies
|

Study design Carer outcomes Interventions

4      

Carer
Carer prepared­ Information/ Method of
Cross- Carer anxiety/ ness/ Home education intervention Risk
RCT/ sectional/ self- Carer depression attitudes for Course/ assessment/ given to given to of
Study n experimental cohort Qualitative Country efficacy Carer QOL burden assessed caregiving education modifications carers carers bias

Aakhus, 30 ✓     Europe     ✓IES ✓IES;   ✓ ✓ ✓ 1 55%

2009 ✓GDS
Acharya, 10     ✓ Europe                 N/A 60%
2015
Bauer, 25     ✓ Australia                 N/A 70%
2011a and
Fitzgerald,
2011a
Boltz, 2015 86 ✓     USA   ✓Mutuality ✓CSI-mod ✓HADS ✓     ✓ 2 55%
scale
Bronson, 16 ✓     Australia           ✓   ✓ 2, 3 10%
2015
Cox, 1994a, 179   ✓   USA     ✓NHI   ✓       N/A 55%
1996aa
and ba
Douglas- 9     ✓ Europe                 N/A 55%
Dunbar,
2007
Jamieson, 30     ✓ Australia                 N/A 80%
2014
Mockford, 15     ✓ Europe                 N/A 75%
2017
Moyle, 2016 30     ✓ Australia                 N/A 75%
Naylor, 51     ✓ USA                 N/A 80%
2005
Schiffczyk, 188 ✓     Europe   ✓QOL-AD ✓Behave-AD ✓GDS       ✓ 1, 2, 3, 75%
2013 (1 item)
Shankar, 495   ✓   Europe ✓   ✓CBI ✓CES-D         N/A 100%
2014

Note: Method of intervention: 1. group, 2. one-to-one, 3. Written.

Abbreviations: CBI, Caregiver Burden Inventory; CES-D, Center for Epidemiologic Studies Depression Scale; CSI-mod, Caregiver Strain Index Modified; GDS,
Geriatric Depression Scale; HADS, Hospital Anxiety and Depression Scale; IES, Impact of Event Scale; NHI, Negative Health Index scale; QOL-AD,
Quality of Life—Alzheimer's disease; RCT, Randomised Controlled Trial.
PRITCHARD et al.

a
Two or more studies using the same cohort.
PRITCHARD et al.
the two warrant separate analysis and then syntheses of find-
ings; and (d) quantitative and qualitative findings need to be
synthesised with appropriately developed methods.18
3  |   R E S U LTS
The literature search yielded 1938 papers. Following du-
plicate removal and screening by title and abstract, 218
remained. Thirteen studies met the inclusion criteria with
205 excluded for varied reasons (eg conducted in a com-
munity setting [n  =  118], grey literature [n  =  25]; See
Figure 1).
Study designs included randomised controlled or qua-
si-experimental trials (n = 4), cross-sectional/cohort designs
(n = 2) and qualitative/exploratory studies (n = 7). Studies
were conducted in Europe (n = 6), Australia (n = 4) and the
USA (n = 3). Sample sizes ranged from 9 to 495 caregivers,
with mean ages of 59.8 years (standard deviation [SD] 13.9)
to 68.7 (SD 8.6) (Table 1). The relationship of caregiver to
the patient with dementia included spouse/partner (ranged
from 23% to 80%),19,20 family member (ranged from 20% to
67%)20,21 and friend/other (ranged from 5% to 23%),22,23 and
five did not state specifics.24-28
3.1  |  Risk of bias (quality assessment)
Six of the 13 studies were assessed as moderate quality (50%-
70%), five as high (70%-90%) and one as very high (100%)
(Table 1). Bronson24 did not meet the 50% cut-off (10%) and
was excluded. Twelve studies remained and were included
for analysis.
3.2  |  Interventions and outcomes measured
The interventions provided to the caregivers during hospitali-
sation comprised a 5-hour training session with caregivers,29
a 4-week 15-hour per week program of group and individual
interventions,28 or individualised nurse education sessions
both during hospitalisation and 6-months following dis-
charge home.30 All programs aimed to provide information
and support to the caregivers, to assist them to return to their
role as caregivers following discharge.
Caregiver outcomes reported on anxiety,29,30 depres-
sion,28-30 burden19,23,28-30 and QOL.28,30 Outcome mea-
sures were the Hospital Anxiety and Depression Scale
(HADS),30 the Impact of Event Scale (IES),29 the Geriatric
Depression Scale (GDS),28,29 two questions from the Center
for Epidemiologic Studies Depression Scale (CES-D),19 the
Quality of Life in Alzheimer's disease scale (QOL-AD),28 the
Negative Health Index scale (NHI),23 and the Mutuality Scale
  
   5
|
(MS).30 Caregiver burden was measured on five different
scales including the Caregiver Burden Inventory (CBI) and
the Modified Caregiver Strain Index (CSI) (Table 1).
Only three studies were able to be included in the meta-anal-
ysis due to missing or incomplete data.28-30 Outcomes reported
in two or more studies were anxiety,29,30 depression,28-30
caregiver burden28-30 and QOL.28,30 Pooled data reported no
significant changes from baseline to 3  months following in-
tervention, anxiety (Standard Mean Difference [SMD] −0.21;
95% CI −0.57, 0.16; I2 33%), depression (SMD −0.22; 95%
CI −0.46, 0.01; I2 0%), caregiver burden (SMD 0.05; 95% CI
−0.18, 0.28; I2 0%) and QOL (SMD 0.32; 95% CI −0.03, 0.60;
I2 0%) (Figure 2A-D).
3.3  |  Qualitative study findings
Thematic analysis of the seven qualitative studies identi-
fied three major themes from caregivers to support them
prior to the patient returning home: (a) personal charac-
teristics; (b) organisational culture; and (c) information
provision.
3.3.1  |  Theme 1: Identifying and
addressing the personal characteristics of
patient and caregiver
This theme describes the importance for staff to consider the
personal characteristics of both patient and caregiver and
comprised three subthemes: (a) cognitive and physical skills
of both; (b) psychological coping ability of the caregiver; and
(c) confidence of the caregiver to be an advocate. Broadly,
the level of cognitive and physical functioning displayed by
both the patient and caregiver was found to contribute to car-
egiver readiness. Patients with greater cognitive impairment
and complex physical needs appeared more likely to be dis-
charged to a nursing home23 as they required input beyond
the capabilities of the caregiver.22 If the caregiver was frail,
this also impacted on their ability to look after the patient at
home as they needed to be able to increase input as the de-
mentia progressed:
I have to do everything for her, it’s difficult.
She can’t do anything, any household duties, fi-
nances or shopping.
(20)
As dependency increases, the level of stress, distress and re-
duced psychological coping of the caregiver became evident.
This in turn impacted on the degree of anxiety, depression and
burden scored by the caregivers in some of the studies. These
areas were also identified as contributing to the degree of
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6       PRITCHARD et al.

(A)

(B)

(C)

(D)

F I G U R E 2   A, Change in caregiver anxiety 3 mo postintervention. B, Change in caregiver depression 3 mo postintervention. C, Change in
caregiver burden 3 mo postintervention. D, Change in caregiver quality of life 3 mo postintervention

readiness the caregiver felt to resume their role at home. The you came in. I was just trying to keep everything
caregiver identified that distress could be allayed by staff to together and really needed support…
some degree: (21)

When you go into hospital it is one of the most
vulnerable times in your life. You walk in and
you are terrified of everything… it’s the time
when you need someone to be nice to you, a lit-
tle bit of tender loving care I suppose.
(21)
Caregivers stated that their level of distress was not often
addressed during hospitalisation, as the primary focus and in-
tervention was on the patient:
Caregiver readiness appeared to depend on the coping abil-
ities the caregiver had previously acquired and how they re-
sponded at times of uncertainty.
Finally, the caregiver's capacity to advocate for their own
needs and those of the patient was identified as being vital
across the care continuum. The patient often experienced di-
minishing abilities to advocate for themselves. Five studies
reported that the caregiver had the primary responsibility of
conveying the needs of the patient with dementia and ensur-
ing they were met:21,22,25,27,31

I think it would be good if nurses had an under- …you really need family there [in hospital] to
standing of how stressful it was for you when articulate what’s going on. She can’t advocate
PRITCHARD et al.
for herself or explain you know. She can’t say
“I’m different to normal”...
(31)
The need for advocacy was reiterated several times as being
able to speak up for the patient with dementia and promote their
needs to the staff.
‘I think our main role is to actually liaise with the doc-
tors as Mum has no recall or memory. Basically just to in-
form the staff of what I know about her care and what her
needs are’.27 The experience of fulfilling the advocacy role
was at times met with opposition from health professionals.
Caregivers highlighted the challenges of not being listened
to or being passed around when faced with advocating for
the patient:
You just get passed around, somehow its no-
body’s job, I just had to manage as best I could.
(25)
This increased the level of caregiver frustration and distress
and negatively impacted their ability to prepare for discharge.
3.3.2  |  Theme 2: Organisational culture
This theme included four subthemes: (a) the attitudes, val-
ues and assumptions held by the organisation and individ-
ual staff; (b) timeliness of caregiver involvement; (c) staff
knowledge about dementia; and (d) effectiveness of commu-
nication strategies. It is also important to recognise how these
subthemes interact with one another to create a therapeutic
relationship with both the person with dementia and the car-
egiver. When health professionals build strong relationships
with the caregiver, they are more likely to be able to support
the readiness of the caregiver to continue their role. It was
reported that this relationship greatly contributed to caregiver
satisfaction and readiness for discharge home.21
The attitude of the staff towards the caregiver was identi-
fied as an important part of being recognised as an expert in
the patient care, and feeling prepared to take back the role of
caregiver when the patient was discharged:
I am no medical practitioner. I am no expert but
I am caring for this person, I’m living with the
person. I know exactly when this person starts
hallucinating.
(27)
When this attitude was lacking, the caregiver felt under-
valued, outside of the decision-making process, and more
stressed.21,22,25-27,31 One study identified that staff stated fam-
ilies were made to fit the system, rather than the other way
  
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   7
around.26 Caregivers wanted to be acknowledged as a val-
ued team member for their expertise in caring for the patient
with dementia, extensive source of information and potential
contribution to decision-making.21,26,27,31 When the caregiver
was not involved as a valued team member, it led to unmet
needs for the patient,22 increased caregiver stress/burden and
decreased caregiver readiness.32
Timeliness of involvement throughout the hospital admis-
sion was highlighted as important to caregivers. Caregivers
wanted to be involved at all stages of the admission including
discharge planning.20 They were often only consulted at the
beginning and then reported to at the end of hospitalisation.
Discharge planning was a period when caregivers reported
frustration at the lack of collaboration and poor communica-
tion received from staff.31
Lack of staff knowledge and understanding of demen-
tia negatively impacted the experience for caregivers and at
times caused increased distress:31
… they [staff] did not understand her condition
or her specific needs, and they were totally at a
loss to understand how to treat her.
(21)
The caregiver continued to state how they had become
an expert in identifying triggers and managing behaviours,
but the staff were not listening to them. Furthermore, care-
givers reported frustration with staff, assuming the patient
was able to make decisions or recall information (when
this was incorrect), which led to a lack of confidence in
the ability of the staff to provide adequate care for the
patient.
A lack of effective or timely communication between
the staff and caregivers was reported.20 Poor communi-
cation contributed to a feeling of exclusion that compro-
mised the advocacy role and negatively impacted carer
readiness:21,25,26,31
… there was never any communication with me,
when I did try and say something they just ig-
nored me and listened to him.
(25)
3.3.3  |  Theme 3: Information provision
This theme incorporated three subthemes: (a) need for con-
sistent information provision throughout admission, (b) in-
formation on disease trajectory and symptom management,
and (c) appropriate mode and timing of communication ap-
peared to support (or hinder) caregivers’ level of readiness.
The lack of information from health professionals was re-
ported as a cause of high frustration:22,26,27,31
 |
8       PRITCHARD et al.
Nobody tells me anything. I haven’t talked to a
doctor…only once… I am in the dark.
(22)
The constant changes of processes, staff and lack of consis-
tent information was frustrating:
Sometimes it was a bit frustrating to try and find
who’s looking after her and where is that per-
son… unless you actually caught somebody at
the bedside, we didn’t have a lot of information.
(31)
Caregivers indicated information provision of techniques
to manage the person with dementia and ongoing support
services available following discharge, as the highest priority
for them, as the patient with dementia was unable to relay
discussions which occurred when the caregiver was absent.
Information that caregivers identified as important to their
role was often not given by the health professionals, and they
were unable to establish whom to ask. Provision of accurate
information about diagnosis, prognosis and trajectory was
important in promoting caregiver readiness for discharge.21,26
Caregivers emphasised the importance of having one central
source for information, for example a key worker to liaise
with during visits.26,27,31
Consideration of the timing, modality and information
delivery method to caregivers was highlighted.31 Caregivers
F I G U R E 3   A proposed model of
caregiver readiness
were often given information at the beginning of admission
when they were stressed and adjusting to the patient's recent
deterioration, and this was often not reinforced or repeated at
a more suitable time.26 Information was not distributed using
the most appropriate method for the needs of the caregiver:
Even when information is available to carers, it
could either be difficult to access or in a form
that fails to match the carer’s preferred learning
style.
(20)
Appropriate modality and timing of information means the
person may require information to be presented in different
ways (eg in writing, diagrams) repeated on several occasions
and in person, not over the phone.20
These three themes were strongly interconnected when
considering caregiver readiness, and following thematic
analysis, a Model of Caregiver Readiness was developed
based on the emergent themes. This identified what was
important to the caregivers, to support caregiver readiness
(Figure 3). The interaction between the personal character-
istics of both the patient and caregiver is not always consid-
ered by health professionals. However, because the skills of
the caregiver can impact the patient and vice versa, consid-
ering the interaction is paramount. Personal characteristics
is also influenced by and influences organisational culture
and the level of information provision. Caregivers who are
PRITCHARD et al.
more confident in being an advocate for the patient are likely
to receive more information and support at the appropriate
times (information provision); however, they could also be
seen as being ‘pushy’ and may tend to alienate staff. This
can depend on the attitude of the health professionals to the
caregiver, their knowledge of dementia and the effectiveness
of communication employed in the service (organisational
culture).
3.4  |  Aggregated synthesis
Synthesis of the quantitative and qualitative data identified
aspects that were potentially interrelated. The interventions
addressed the need for clear information about the disease,
identification of psychological response, development of cop-
ing mechanisms and assessment of the home environment.
When interventions are provided to the caregiver in the context
of the hospital setting to enhance these skills, there is a like-
lihood of reducing anxiety, depression, caregiver burden and
improving QOL. However, the meta-analysis did not identify
a significant reduction in these outcomes 3 months following
intervention and further investigation is required. Caregivers
identified when personal characteristics of both patient and
caregiver are considered, caregivers are included as an integral
part of the team (as they requested), and they receive timely
and effective information, the level of stress is likely to reduce,
and their ability to cope to be ready for discharge is likely to
increase. If we address the Model of Caregiver Readiness with
caregivers in hospital settings and identify levels of anxiety de-
pression, burden, QOL and coping abilities, then we could po-
tentially promote higher levels of readiness with the caregiver.
Even though these caregiver outcomes did not change signifi-
cantly in the meta-analysis, the caregiver returned to their role
(in most instances as primary caregiver) for the patient at home.
This indicated that some anxiety and depression is not necessar-
ily a barrier to care for the patient with dementia, but neverthe-
less a factor for consideration.
Only five studies measured caregiver burden on a vari-
ety of validated scales and two measured QOL. Although the
impact of caring for a patient with progressive dementia is
dynamic, many of the studies did not measure this outcome.
This could potentially suggest that these variables were dif-
ficult to capture in this population. Caregiver burden was the
only factor that overlayed each of the emergent themes and
therefore requires further consideration in research regarding
promotion of caregiver readiness.
4  |   D IS C U SSION
This mixed-methods systematic review sought to explore
two areas: (a) the impact of caregiver programs to support
  
|
   9
them to continue caring for the patient with dementia fol-
lowing discharge home; and (b) describe the factors that
caregivers identified as important for them to receive from
staff during hospitalisation. Meta-analysis of three quan-
titative studies found that providing caregiver programs
did not significantly reduce the level of anxiety, depres-
sion, burden or increased QOL, thereby potentially failed
to meet the needs of the caregivers. The thematic analysis
identified three main themes: consideration of the charac-
teristics of both patient and caregiver; the organisational
culture embraced by the hospital (caregiver is part of the
team); and the level of information provided and knowl-
edge of dementia demonstrated by staff, during hospitali-
sation. The Model of Caregiver Readiness was created to
highlight the relationships between the emergent themes,
which could be used when designing future caregiver pro-
grams. Health professionals need to consider both the car-
egiver and the patient abilities, how they are supported to
communicate with the staff, the response from the staff to
both the caregiver and patient and the timing of the infor-
mation provided.
Despite the inclusion of information and support from
the caregiver programs, these three themes may have been
missing. Therefore, the findings did not reach statistical
significance. The interaction between caregiver programs
and potential outcomes of level of anxiety, depression,
carer burden and QOL is complex. The overall impact of
the programs was not consistently measured or reported in
the reviewed studies. It appears that information and sup-
port on their own do not significantly decrease the stressors
identified or positively impact the readiness for caregivers
to continue their role at home. The findings suggest the
need to investigate this area with more rigour and consis-
tency. Perhaps the measures of anxiety and depression can-
not be addressed by such interventions even though they
can impact ability to cope with transitions.12 However, if
we do not incorporate the themes proposed in the model
throughout hospitalisation, we may further increase care-
giver stress escalating higher levels of adverse effects. This
may in turn negatively impact the caregiver burden and
QOL even further.
The QOL outcome was only measured in two reviewed
studies28,30; however, this was mentioned in additional
studies as being an important consideration when caring
for those with dementia.19,31 QOL can be perceived as
being influenced by the personal characteristics of both the
patient (level of function, stage of dementia, level of depen-
dency) and the caregiver (physical/mental health).33 These
factors can influence the decision of whether a person re-
turns home or requires residential care.34 Along with the
demands of caring for someone at home, there have been
positive rewards documented such as reciprocity, increased
meaning in life and development of deeper relationships.5
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10       PRITCHARD et al.
These rewards alongside potential financial implications,
the closeness of relationship, the family dynamics and cul-
tural beliefs, all appear to play a part on QOL and the de-
cision to continue caregiving at home or not.33,35 Personal
and family factors are likely to impact both positively and
negatively on the level of caregiver readiness and whether
caregivers perceive they are able to continue, regardless of
the strain they may feel.
This review suggests that health professionals need to
provide targeted information to the needs of the caregiver
within an inclusive organisational culture using highly
effective and timely communication.30,32 Best practice
suggests the need to include the caregiver throughout the
patient's admission (not just at discharge) and identify
the caregiver as an integral part of the caring process.31
Caregivers identified that staff working with them need
to be trained in dementia care to better understand the de-
mands. Although there are identified factors that need to
be included in programs to support caregiver readiness
for discharge, the most efficacious interventions are still
unknown.
4.1  | Limitations
This review was not limited to randomised controlled trials,
due to the research questions identified, and therefore pro-
vided a complexity of quantitative and qualitative data for
synthesis. Only three of the studies were randomised con-
trolled trials using non-standardised programs, and we were
unable to explore the moderating effects of the interventions
on key variables (such as age of the carer, gender and educa-
tional background). Additionally, since the follow-up of par-
ticipants was no longer than 3 months, the long-term effect
of any hospital-based interventions on caregiver readiness
remains unknown.
5  |   CO NC LU S ION
This mixed-methods systematic review explored the ef-
fect of caregiver programs provided in a hospital setting
and identified the considerations caregivers describe are
needed, to support their readiness for the discharge of a
patient with dementia. Meta-analysis identified that the
targeted caregiver programs did not significantly decrease
levels of anxiety, depression, burden or QOL. Emergent
themes from the qualitative analysis identified the impor-
tance of considering the personal characteristics of both the
patient and the caregiver, embracing an inclusive organi-
sational culture and receiving care and information from
skilled dementia trained staff in a timely and appropriate
manner.
Given that organisational cultures and practices are likely
to differ across hospitals and individuals, it is difficult to cre-
ate a consistent approach. Supporting the caregiver to provide
care for a person with dementia following discharge to home
is not likely to improve unless models of caregiver support
are updated and evaluated for efficacy. Health professionals
need to consider an integrated approach of these three vital
areas to support effective caregiver readiness for discharge.
Further research is required to investigate the impact of a
consistent approach of intervention programs and measure-
ment of outcomes for caregivers.
ACKNOWLEDGEMENTS
The authors wish to thank the occupational therapy team and
clinical performance unit at Alfred Health for assistance with
access to the data.
CONFLICT OF INTEREST
No conflicts of interest declared.
ORCID
Elizabeth Pritchard  https://orcid.org/0000-0003-4284-4378
Veronica Delafosse  https://orcid.org/0000-0002-6862-2717
Laura Jolliffe  https://orcid.org/0000-0002-1369-9442
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How to cite this article: Pritchard E, Cussen A,
Delafosse V, Swift M, Jolliffe L, Yeates H.
Interventions supporting caregiver readiness when
caring for patients with dementia following discharge
home: A mixed-methods systematic review. Australas
J Ageing. 2019;00:1–12. https​://doi.org/10.1111/
ajag.12765​
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12       PRITCHARD et al.

APPENDIX 1

Online Search
Ovid MEDLINE (R) <1946 to May Week 3 2018
#    
1 Exp Dementia/ 146681
2 Dementia.tw 78487
3 1 or 2 167211
4 Caregivers/ 30187
5 (carer* or Care?giv*).tw. 54086
6 4 or 5 62062
7 Hospitalization/ 93178
8 Hospital#ation*.tw. 115416
9 Inpatients/ 18089
10 In?patient*.tw. 78824
11 (hospitali$ adj1 patient*).tw 34441
12 7 or 8 or 9 or 10 or 11 261775
13 Directive Counseling/ or Motivational Interviewing/ or Social Support/ or Anxiety/ or Grief/ or Fear/ or Guilt/ or 172572
Frustration/ or Loneliness/
14 (directive counsel$ing or motivational interview* or coach* or teach* or knowledge or inform* or counsel* or anxiety 2055794
or grief or fear* or guilt* or lonely or loneliness or frustrat*).tw.
15 ((non$pharmacological* or non-pharmacological*) adj5 (intervention* or approach* or therap* or treatment* or 6004
management*)).tw.
16 13 or 14 or 15 2130643
17 Occupational Therapy/ 12181
17 Occupational therapy*.tw. 9916
19 17 or 18 15481
20 Patient Discharge/ 25248
21 Homecare services/ or home care services, hospital-based 32956
22 3 and 6 and 12 and 16 155
23 3 and 6 and 12 and 19 5
24 3 and 6 and 12 and 20 16
25 3 and 6 and 12 and 21 35
26 22 or 23 or 24 or 25 179
27 Limit 26 to English language 159
28 Limit 27 to ed=20170203-20180528 26