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A european study investigating patterns of transition from home care towards institutional dementia care: the protocol of a righttimeplacecare study
Verbeek et al. BMC Public Health 2012, 12:68http://www.biomedcentral.com/1471-2458/12/68
A European study investigating patterns oftransition from home care towards institutionaldementia care: the protocol of aRightTimePlaceCare study
Hilde Verbeek1*, Gabriele Meyer2, Helena Leino-Kilpi3,4, Adelaida Zabalegui5, Ingalill Rahm Hallberg6, Kai Saks7,Maria Eugenia Soto8, David Challis9, Dirk Sauerland10 and Jan PH Hamers1, forthe RightTimePlaceCare Consortium
Background: Health care policies in many countries aim to enable people with dementia to live in their ownhomes as long as possible. However, at some point during the disease the needs of a significant number ofpeople with dementia cannot be appropriately met at home and institutional care is required. Evidence as to bestpractice strategies enabling people with dementia to live at home as long as possible and also identifying theright time to trigger admission to a long-term nursing care facility is therefore urgently required. The current paperpresents the rationale and methods of a study generating primary data for best-practice development in thetransition from home towards institutional nursing care for people with dementia and their informal caregivers.
The study has two main objectives: 1) investigate country-specific factors influencing institutionalization and 2)investigate the circumstances of people with dementia and their informal caregivers in eight European countries.
Additionally, data for economic evaluation purposes are being collected.
Methods/design: This paper describes a prospective study, conducted in eight European countries (Estonia,Finland, France, Germany, Netherlands, Sweden, Spain, United Kingdom). A baseline assessment and follow-upmeasurement after 3 months will be performed. Two groups of people with dementia and their informalcaregivers will be included: 1) newly admitted to institutional long-term nursing care facilities; and 2) receivingprofessional long-term home care, and being at risk for institutionalization. Data will be collected on outcomes forpeople with dementia (e.g. quality of life, quality of care), informal caregivers (e.g. caregiver burden, quality of life)and costs (e.g. resource utilization). Statistical analyses consist of descriptive and multivariate regression techniquesand cross-country comparisons.
Discussion: The current study, which is part of a large European project ‘RightTimePlaceCare', generates primarydata on outcomes and costs of long-term nursing care for people with dementia and their informal caregivers,specifically focusing on the transition from home towards institutional care. Together with data collected in threeother work packages, knowledge gathered in this study will be used to inform and empower patients,professionals, policy and related decision makers to manage and improve health and social dementia care services.
Keywords: Dementia, Long-term care, Professional home care, Nursing homes
* Correspondence: 1Department of Health Services Research, CAPHRI School for Public Healthand Primary Care, Maastricht University, P.O. Box 616, 6200 MD Maastricht,the NetherlandsFull list of author information is available at the end of the article
2012 Verbeek et al; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative CommonsAttribution License ), which permits unrestricted use, distribution, and reproduction inany medium, provided the original work is properly cited.
Verbeek et al. BMC Public Health 2012, 12:68
homes when already quite dependent, at later stages of
Action is urgently required to prepare health care ser-
dementia. This can leave families carrying a high burden
vices in delivering more cost effective and higher qual-
of care. Furthermore, a recent study suggests that sav-
ity care for people with dementia and their informal
ings on an aggregated level may be variable at the indi-
caregivers. With ageing populations the number of
vidual level [. Policy makers need to understand who
with dementia is ever increasing with no sign yet of a
pays and benefits from certain interventions, taking
cure for the disease. Symptoms of dementia include a
account of costs associated with patient location, disease
general loss of cognitive, functional and mental cap-
characteristics (e.g. dementia severity) and type of care
abilities, resulting in diverse needs. Some needs require
health care and some are more appropriately met by
Currently, there is little evidence to assist decision
social care, although the boundaries between these
making as to when home care or institutional care is
needs are hard to delineate [Demands for health,
more favorable for people with dementia and their
social and nursing care arise when needs of people
families. Similarly, little is known about specific charac-
with dementia and their caregivers are not fulfilled,
teristics of people with dementia who benefit most from
usually due to insufficiencies in resources especially
institutional as opposed to home-and community-based
related to manage everyday activities and a lack of
research . Therefore, it is unclear whether preventing
social network [.
admission to an institutional long-term nursing care
A common policy principle in European countries
facility is the best approach for all people with dementia
nowadays is to enhance resources for home- and com-
and their informal caregivers. Information on best prac-
munity-based care services. This is to enable people
tice strategies to enable people with dementia with
with dementia to remain in their own homes for as
dementia to live at home as long as possible but also to
long as possible, trying to delay institutionalization
define the right time to trigger the admission to an
However, it is questionable whether this is an
institutional long-term nursing care facility is therefore
beneficial policy for all people with dementia and their
caregivers. The underlying belief is that most older
Most people with dementia will be admitted to a care
people, including those with complex care needs such
facility at some point, since their needs cannot be met
as dementia, prefer to live at home since this is a
appropriately in the home situation [Although
familiar environment [. Amongst expected benefits
many studies have investigated predictors of institutio-
are that people with dementia remain able to maintain
nalization [it remains unclear if predictors are
their social networks and enjoy a better quality of life
country specific. Both patient (e.g. severity of cognitive
]. Cultural aspects, such as beliefs that children are
and functional disability) and caregiver characteristics (e.
responsible for older adult's care, could also influence
g. perceived burden, coping strategies) could play an
the decision to keep people with dementia at home for
important role. There is evidence that rates of institutio-
as long as possible The decision to move people
nalization and time to admission to a nursing home
with dementia from home care to institutional care is
may vary substantially among countries ]. For
a complex one and is influenced by both patient and
example, a recent study found that people with demen-
caregiver characteristics, available resources and care
tia with similar characteristics and treatment patterns
had a lower risk of nursing home placement in the UK
Evidence to support the timing of this decision is cur-
compared with northern Scandinavian countries [
rently lacking, impeding appropriate timing of institutio-
Variations in health care structure, dementia care policy,
nalization. For example, knowledge of outcomes and
availability of services, cultural values and funding sys-
relative benefits such as quality of life and quality of
tems may all contribute to these differences. However,
care between home and institutional nursing care for
there is little primary data across countries to under-
people with dementia in various stages of the disease is
stand variations in predictors of institutionalization for
currently unknown. To assure more appropriate entry
people with dementia.
to institutional settings, more information on serviceprovision and related outcomes on quality of life and
Aims and objectives
quality of care is therefore urgently needed.
This study is part of a large European research project
Cost information is also important for policy makers.
called ‘RightTimePlaceCare' (RTPC), which consists of
It would be dangerous to assume that a shifting balance
six work packages (WPs) (see Figure . The RTPC pro-
from institutional towards community care will necessa-
ject aims to improve health services for European citi-
rily be cost reducing . One consequence of this shift-
zens with dementia and is explained elsewhere in detail
ing balance is that older people are admitted to care
The current study generates primary data in the
Verbeek et al. BMC Public Health 2012, 12:68
WP1: Management of the Consortium (DE) *
Description of Health Care
Clinical Data Collection (NL)
Best Practice Strategies (ES + EE)
Economic Evaluation (DE)
WP6: Dissemination (DE) ¦
Figure 1 Overview the European project ‘RightTimePlaceCare. * Work Package (WP) leaders are mentioned in brackets; DE = Germany; SE =Sweden; NL = Netherlands; ES = Spain; EE = Estonia; † WP2 aims to describe and analyze European health, social and welfare structures andexplores intersectorial communication; ‡ WP3 is described in the current study protocol; § WP4 aims to analyze cost-benefit ratio of services forrelevant stakeholders; WP5 aims to develop best-practice strategies and to deliver meaningful and feasible recommendations for future dementiacare; ¦. WP6 aims to develop and apply dissemination and implementation strategies of the RTPC project.
transition from professional home care towards institu-
tional nursing care for people with dementia and their
informal caregivers for best-practice development. It
This is a prospective cohort study, conducted in eight
constitutes the third WP of the RTPC study and has
European countries (Estonia, Finland, France, Germany,
two main objectives:
Netherlands, Sweden, Spain, United Kingdom). We
1) To assess the factors influencing the institutionali-
attempted to include countries from all over Europe (i.e.
zation of people with dementia at the time of admission
northern, southern, eastern and western parts of Eur-
to institutional long-term nursing care facility.
ope). A baseline assessment is performed between
2) To investigate the circumstances and living condi-
November 2010 and December 2011 and follow-ups are
tions of people with dementia receiving long-term pro-
conducted after 3 months (see Table
fessional home care or institutional nursing care andtheir informal caregivers. Emphasis is placed on:
Setting and participants• The current study focuses on long-term care and con-
a) Quality of care and quality of life of people with
sists of two strata:
dementia in institutional long-term care and home
• Group 1: People with dementia newly admitted to
institutional nursing care facilities (i.e. within one to
b) Caregiver burden and quality of life of informal
three months after admission) and their informal care-
caregivers of people with dementia in institutional
givers or next of kin;
long-term care and home care.
• Group 2: People with dementia who receive profes-
sional home care and are at risk of institutionalization
In addition, information on direct and indirect costs
(i.e. on the margins of long term care admission) and
their informal caregivers or next of kin.
Verbeek et al. BMC Public Health 2012, 12:68
Table 1 Study design
800 People with dementia (PwD) newly admitted to a facility and their informal caregivers (IC) or
next of kin (100 PwD + 100 IC per group per country)
1400 PwD receiving professional home care and their IC or next of kin (150 PwD + 150 IC per
group per country)
daily living, hygiene and other personal care, routine
A minimum of three different long-term nursing care
technical nursing procedures, patient education and
facilities and three professional home care organizations
counseling, psychosocial activities.
will be recruited per country, in order to achieve somevariation in the sample for recruitment of subjects. To
target similar populations across countries with varying
The study population consists of dyads of people with
health and social care structures in long-term care, we
dementia older than 65 years of age and their informal
used the following care definitions:
caregivers, who require formal care/help either from:
Formal long-term care
1) institutional nursing care facilities. Target n in
A range of services for people who need assistance on a
group one is 800 dyads in total (i.e. 100 per country).
continuing basis due to chronic impairments (resulting
We expect a drop-out rate of 15%. Therefore, we aim to
from physical or mental disability) and a reduced degree
include 115 dyads per country in this setting.
of independence and activities of daily living. This cen-
2) professional home care organizations. Target n in
tral personal care component is frequently provided in
group two is 1200 (i.e. 150 per country), since we
conjunction with help in basic medical services such as
assume that the variance in this group is higher. With
wound dressing, pain management, medication, health
an expected drop-out rate of 15%, we aim to include
monitoring, prevention rehabilitation or services for pal-
175 dyads per country in this setting.
liative care . This care is provided by formal care-
People with Dementia
givers, professional caregivers that are paid for their job.
Inclusion criteria for people with dementia consist of
As such the caregiver may well possess formal profes-
1) a formal diagnosis of dementia as diagnosed by an
sional education, either in health care/nursing and/or
expert assessment (i.e. physician, psychiatrist, neurolo-
gist, geriatrician or general practitioner depending on
Institutional long-term nursing care facilities
countries' specific diagnostic procedures) and recorded
Nursing and personal care provided in an institution
in the medical record; 2) an MMSE score of 24 or
which at the same time serves as a residence of the care
below and 3) the presence of an informal caregiver
recipient. This should be distinguished from short-term
who visits at least twice a month. The severity and
care provided received in institutions, such as respite
type of dementia may vary but will be recorded if
care and rehabilitation. An institution is a place of col-
information is available. In addition, each group has
lective living where care and accommodation are pro-
specific inclusion criteria. People with dementia who
vided as a package by a public agency, non-profit or
are newly admitted to a long-term institutional nursing
private company. Residents may or may not be charged
care facility (Group 1) are included if they live at least
separately for care services and accommodation. In
1 month in the institution and no longer than 3
institutional nursing care, a significant part of the the
months. People with dementia institutionalized only
care provided is a mix of health and social services with
for a limited period of time a priori (e.g. rehabilitation,
the health services being largely at the level of nursing
respite care) with the intention of moving back home
are excluded. People with dementia who receive pro-
Professional long-term home nursing care
fessional home nursing care (Group 2) should be at
Refers to long-term care services that can be provided to
risk for institutionalization. This means that a formal
patients at home by professional home-nursing organi-
caregiver (e.g. registered nurse, general practitioner)
zations and home-help services. This could also include
judges institutionalization as probable within 3 to 6
care provided at day-care Examples of home nur-
months. Reasons for being adjudged at-risk may vary
sing: helping patients with basis needs in activities of
Verbeek et al. BMC Public Health 2012, 12:68
gender, education, marital status, living situation,
Informal care is defined as care provided by informal
income, cultural background (i.e. native country, reli-
caregivers, such as spouses/partners, other members of
gion, ethnicity) and dementia diagnosis related
the household, relatives, friends, neighbors or others,
usually but not necessarily with an already existingsocial relationship to the person they provide care
Measures for informal caregivers
Caregivers who provide care on a voluntary basis
Outcome measures for informal caregivers include qual-
through an organization (such as a church group), or
ity of life (EQ-5D) caregiver burden (ZBI) [
those who provide care as a career are not defined as an
psychological well-being (GHQ-12) [positive and
negative consequences of caregiving (CRA) ; experi-
All main caregivers providing informal care for older
ences on quality of care (9 items from CLINT)  and
people with dementia participating in this study are eli-
an additional item ‘overall, I am satisfied with the qual-
gible. The number is limited to one main informal care-
ity of care provided by the organization' as rated on a 5-
giver per older person with dementia, defined as the
point Likert scale ranging from totally agree to totally
person who is most involved in care for the people with
disagree); use of personal and social resources and ser-
dementia. For people in institutional nursing care, the
vice use (RUD) . Furthermore, an open-ended ques-
term informal caregiver may not be completely appro-
tion is addressed to gain insight in the transition
priate. In this case, the next of kin/significant other is
process (either ‘what is the main reason for institutiona-
included, being the person who is close to the person
lization?' or ‘under what circumstances do you consider
with dementia (spouse, children, grand children, other
institutionalization necessary?'). Sociodemographic vari-
relatives or friends) and most involved in the decisions
ables include age, gender, educational background, mari-
about their care.
tal status, health status, number of visits per month,living situation and relation to people with dementia.
MeasuresTable summarizes all outcome measures. Variables
regarding people with dementia and their informal care-
Costs are measured using the RUD [It assesses
givers are chosen based on recent models predicting
information on resources used (e.g. frequency and dura-
care demands predicting institutionalization for peo-
tion of hospitalization, visits to health care professionals
ple with dementia , and quality of care Mea-
and type of care, medication use, use of social services)
surement instruments are selected based on their
for both patients and informal caregivers. In addition,
psychometric properties (validity, reliability), clinical uti-
the RUD investigates caregiver time, defined as time
lity and appropriateness for the target settings and
spent on providing basic activities of daily living (e.g.
population. If necessary, questionnaires are translated
washing, dressing), instrumental activities of daily living
according to a standardized backward forward transla-
(i.e. cooking, handling financial affairs) and time spent
tion procedure Prior to the study, permission was
on supervision (e.g. preventing self-harm). It also
obtained for use and translation of questionnaires.
assesses caregiver work status and whether informal car-egiving substitutes for paid work. The RUD-FOCA is
Measures for people with dementia
used to record direct care time in institutional nursing
Outcome measures for people with dementia include
cognitive status (SMMSE) independence inactivities of daily living (KATZ) , neuropsychiatric
symptoms (NPI-Q) [quality of life (QoL-AD,
Trained interviewers collect all data during face-to-face
both self-and proxy assessment) , comorbidity
interviews. All interviewers are professionals in health or
(Charlson Comorbidity Index) [and medication use.
social care or medical/nursing/social care students with
Furthermore, several quality of care indicators as based
practical experience and at least a Bachelors degree.
on recent literature ] are assessed: nutritional status
Furthermore, they received an additional training on the
(one item question ‘did the patient experience a weight
project, all procedures, content of the assessments and
loss of 4% or more of his weight in the past year?') [
completion of questionnaires.
falls (falls and fall-related injuries during preceding 3
In order to standardize and facilitate data collection,
months), pressure ulcers (presence and severity); depres-
the WP3 leading centre (Maastricht University, the
sive symptoms (CSDD) ; use of physical restraints (8
Netherlands) has prepared a manual as a standardized
items from MAQ) ; pain (items from RAI-MDS on
operating procedure (SOP). This manual has three parts:
presence, frequency and location) and mortality
1) preparation for the interviews, with information on
registration. Sociodemographic information includes age,
selection of institutions and participants, instructions for
Verbeek et al. BMC Public Health 2012, 12:68
Table 2 Measurement instruments
People with dementia
Personal and social resources
Quality of care indicators
Item on weight loss
MDS based indicators. Presence, frequency, intensity and
Frequency and injuries recent falls
Positive and negative aspects of
24 (5 dimensions)
Availability of resources
Quality of Life informal caregivers
Experiences on QoC
9 items of the CLINT
open ended questions
* the underlined score represents the most favorable score; † at home: informal caregiver; institutional nursing care: formal caregiver; ‡ If a PwD total score is lessthan 3 on the MMSE, Qol–AD will be assessed only using proxy reports
interviewers and the study pilot; 2) the interview con-
each individual country. Two follow-up meetings were
tent, explaining the measurement assessments used dur-
scheduled (February and September 2011) for all
ing the interviews; and 3) data handling, describing
researchers to discuss experiences regarding recruitment
procedures regarding handling and storage of data, data
and data collection, taking country-specific issues into
audit and data entry. The manual and all questionnaires
were prepared in English and translated to the national
Data are centrally managed by the RTPC coordinating
languages following a strict instruction to facilitate a
centre (Witten University, Germany) in close contact to
standardized layout for data entry purposes.
the WP3 team who has prepared the SPSS database.
An instruction meeting took place in September 2010,
Countries prepare either 1) copies of the original data
before the start of recruitment when the manual and
collection forms for keeping at their institutions or 2)
procedures were explained by the WP3 team to all main
scan the original data collection forms for generation of
investigators in each country. These main investigators
pdf files (or another image file). Completeness and cor-
are responsible for transfer of all standardized instruc-
rectness of each file will be checked immediately after
tions towards interviewers in each country. At this
scanning by countries. Each country will deliver either
meeting the inclusion and selection criteria for study
1) the original client record files or 2) a data storage
participation were discussed, based on a template pre-
medium comprising the scanned files to the RTPC coor-
pared by the WP3 leading centre and completed by
dinating centre by secured post or express courier or
Verbeek et al. BMC Public Health 2012, 12:68
even personally by a researcher. Data will be delivered
People with dementia and their informal caregivers
twice during the project: after baseline and follow-up
participate on a voluntary basis and their informed con-
assessment. Data entry will be performed centrally at
sent is given by their (legal) representatives and if possi-
the RTPC coordinating centre. All files will be processed
with FormPro Software. Furthermore, the RTPC coordi-
representative refers to either a legal authorized repre-
nating centre has prepared a text file database for all
sentative or, if not available, the informal caregiver of
open-ended questions (in English), including medication
the people with dementia who has the power to consent,
classification according to the ATC coding system, to
according to country specific guidelines and regulations.
ensure standardization across countries and enhance
People with dementia who are not able to sign informed
consent are asked to assent Assent is defined aswillingness to participate even without full understand-
ing of the complexity and the whole aims of the study.
An external audit of data plausibility and data manage-
During interviews, a sense of comfort for the partici-
ment will be performed in each country to ensure qual-
pants, with active monitoring of willingness to partici-
ity of data collection. The RTPC coordinator (GM) has
pate and signs of (non)verbal dissent or distress [are
developed a SOP and data audit checklist and provided
provided by the interviewers. Finally, a specific SOP on
training for each independent external auditor. The
ethical issues encountered during data collection was
audit is performed in all countries by a trained external
developed by the RTPC coordinator. Each researcher is
data monitoring auditor, who has a minimum qualifica-
trained to follow these guidelines.
tion level of a Bachelor's degree in nursing science or arelated field of study, is not involved in the study and
has good English language skills. The data check covers
The main objectives of the current study are to investi-
at least 20% of randomly selected client record files.
gate factors influencing institutionalization and to
Names of participating patients and residents remain
explore circumstances and living conditions of people
concealed for the auditor. Furthermore, the auditor will
with dementia and their informal caregivers receiving
visit at least one or two participating institutional nur-
home or institutional nursing care. As this is a cohort
sing care facilities and one or two participating home
study with two strata, the statistical analyses will be pri-
care organizations to verify their existence and contribu-
marily a descriptive comparison between the two strata.
tion to participant recruitment.
First, descriptive analyses will be conducted at the levelof setting and country at baseline and follow-up. Out-
come measures at baseline, follow-up and the changes
The Good Epidemiological Practice guidelines recom-
between baseline and follow-up of the settings as well as
mended by the International Epidemiological Association
between the settings will be described for all countries
European Federation are followed. Furthermore, each
and each country separately. Therefore, crosstabulations
country has obtained ethical approval from a country
will be used for discrete variables and boxplots, mean/
specific legal authority for research on human beings (for
medians and quartiles for continuous variables. Bivariate
example a ethical committee specialized in medical or
and correlation analyses will be conducted to relate
nursing science) to conduct the study in accordance with
(socio)demographic variables and outcome measures for
the national standards and regulations in participating
People with dementia and informal caregivers. Multi-
countries. The specific names of each committee are as
variate regression analyses are conducted per time point
follows (with reference numbers if appropriate in brack-
and longitudinally. To answer the first objective (factors
ets): Ethics Review Committee on Human Research of
influencing institutionalization), additional prospective
the University of Tartu (196/T-3), Ethical Committee of
regression analyses will be conducted for the subgroup
the South-West Hospital District Finland (8/2010),
of participants that were institutionalized during the
Comite de Protection ds Personnes Sud-Ouest and
study period (i.e. baseline assessment in home care
Outre-Mer Toulouse (09 202 07), Nursing Science Ethi-
(Group 2), follow-up in institutional care (Group 1)). A
cal Committee University of Witten/Herdecke, Medical
biostatistician is consulted during preparation of the sta-
Ethical Committee of the Academic Hospital Maastricht/
Maastricht University (MEC 10-5-044), Ethical Commit-tee of the Hospital Clinic Barcelona (2010/6031), Ethical
Interpretation of findings
Committee Lund University (20120/538), National
The current study generates primary data on outcomes
Research Ethics Service, North West 5 Research Ethics
and costs of long-term nursing care for People with
Committee (11/NW/0003). Prior to data collection,
dementia and their informal caregivers, specifically
informed consent will be obtained for all participants.
focusing on the transition process of professional formal
Verbeek et al. BMC Public Health 2012, 12:68
home care towards institutional care. To interpret these
RightTimePlaceCare ]. Together with data collected
findings, data will be combined with knowledge gath-
in three other work packages, RTPC aims to develop
ered in the other Work Packages (WPs) of the RTPC
best-practice strategies for need-tailored care while
study. WP2 (leading centre Lund University, Sweden)
ensuring best available outcomes for people with
analyses European health care structures, social care and
dementia and their informal care givers at affordable
welfare systems, advocacy and informal caregiver sup-
cost-benefit ratios. A RTPC Consortium and Advisory
port systems for patients/consumers with dementia and
board of expertise were set up, representing nursing,
intersectorial communication covering the continuum of
medical, health economics, social care, public policy and
care from informal care, contribution from the civil
other professional disciplines. Several representatives of
society, public home care and the intermediate forms of
the project are closely related to national political
care to the long-term institutional care, including end of
boards as well as to institutions and political boards of
life care. WP4 (leading centre Witten/Herdecke Univer-
the European Union. This will enable a widespread dis-
sity, Germany) assesses costs in long-term dementia
semination of results throughout disciplines, scientific
care for the time period just before and just after the
and non-scientific media.
admission to institutional long-term nursing care facil-
The study is limited by its relatively short follow-up
ities from a societal perspective. This means that all
period of 3 months, due to practical restraints. To study
relevant costs (direct costs, indirect costs and opportu-
the transition process from professional home care
nity costs) will be assessed. Finally, WP5 (leading cen-
towards institutional nursing care, we examine out-
tres Hospital Clinic of Barcelona, Spain and University
comes for two groups of participants who are at the
of Tartu, Estonia) aims to generate best practice strate-
margins of care: 1) people with dementia who have
gies that can be integrated into existing European health
recently been admitted to an institutional nursing care
and social care systems in order to enable national deci-
facility and their informal caregivers; 2) people with
sion makers to base their decisions on the best knowl-
dementia who are at-risk for institutionalization, receiv-
edge available when they reform the organisation of
ing professional care at home and their informal care-
dementia care. To accomplish this goal, results from
givers. However, the group of participants who actually
WP2 (health care structures), WP3 (primary data collec-
switch from home towards institutional care during our
tion) and WP4 (economic evaluation) will be integrated
study period may be relatively small.
with a literature review and Delphi consensus methodol-
An important strength of the current study is its over-
ogy, employing a balance of care methodology, unique
all size and the cross-country comparisons. Much varia-
in its international configuration
tion among care concepts (e.g. what constitutes anursing home?) and health care structures may exist
across European countries, which in turn might affect
All countries have received formal ethical approval for the
outcomes and its interpretation. Since this study is part
study. Baseline data collection started in November 2010
of a larger European project, we were able as one of the
and is intended to end in December 2011. Monthly pro-
first studies to simultaneously collect primary clinical
gress reports are provided by each country as an instru-
data alongside a thorough analysis of organization of
ment to supervise enrolment of participants. By November
health care structures, execution of an economical eva-
2011, 1757 dyads of people with dementia and their infor-
luation and combine this with recent literature in order
mal caregivers were included in the study (683 in the insti-
to develop best-practice strategies. This knowledge will
tutional care setting and 1074 in home care setting).
be used to inform and empower patients, professionals,
Furthermore, 996 follow-up interviews had been con-
policy and related decision makers to manage and
ducted at that date. Follow-up data collection is expected
improve health and social dementia care services
to end in March 2012. The data audit has been completedby external independent auditors for all eight countries.
Appendix 1The RightTimePlaceCare Consortium partners are:
The current study is focused on the transition of people
Witten/Herdecke University (DE): Gabriele Meyer,
with dementia and their informal caregivers from pro-
professor (scientific coordinator, WP 1 leader), Astrid
fessional home nursing care towards long-term institu-
Schmitz, Anna Renom Guiteras, Dirk Sauerland, profes-
tional nursing care facilities. This paper describes the
sor (WP 4 & 6 leader), Dr Ansgar Wübker, Patrick
research protocol to investigate factors influencing insti-
tutionalization and circumstances and living conditions
of participants across eight European countries being
Maastricht University (NL): Jan P.H. Hamers, profes-
the third work package in a larger European study called
sor (WP 3 leader); Basema Afram, Hanneke Beerens, Dr
Verbeek et al. BMC Public Health 2012, 12:68
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Pre-publication historyThe pre-publication history for this paper can be accessed here:
doi:10.1186/1471-2458-12-68Cite this article as: Verbeek et al.: A European study investigatingpatterns of transition from home care towards institutional dementiacare: the protocol of a RightTimePlaceCare study. BMC Public Health2012 12:68.
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