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EDSS Focus group interviews about dementia care in eight European countries, from
the perspective of people with dementia and their caregivers.
Staffan Karlsson, PhD, RN
1
, Michel Bleijlevens, PhD, PT
2
, Brenda Roe, PhD, RN
3
, Maria
Soto Martin, MD
4
, Astrid Stephan, MScN, RN
5
, Riitta Suhonen, PhD, RN, FEANS
6
,
Adelaida Zabalegui , PhD, RN, FEANS
7
, Ingalill R Hallberg, PhD, RN, FEANS, FAAN
8
on
behalf of the RightTimeCarePlace Consortium*
1) Assistant Professor in Health Care Science, Lund University, Sweden,
staffan.karlsson@med.lu.se
2) Researcher, Maastricht University, Department of Health Services Research, The
Netherlands, m.bleijlevens@maastrichtuniversity.nl
3) Professor of Health Research, Edge Hill University; Honorary Fellow, PSSRU,
University of Manchester, United Kingdom, bhroe@aol.com
4) Geriatrician, Head of Alzheimer Acute care ward, Gerontopôle, Alzheimer’s disease
Research and Clinical Center, INSERM 1207 in Toulouse University Hospital, France,
soto-martin.me@chu-toulouse.fr
5) Researcher, Department of Nursing Science Witten/Herdecke University, Germany,
Astrid.Stephan@uni-wh.de
6) Professor, University of Turku, Department of Nursing Science, Turku, Finland,
riisuh@utu.fi
7) Upsilon, Director of Nursing, Hospital Clinic of Barcelona, Spain, azabaleg@clinic.ub.es
8) Omega, Senior Professor in Health Care Science, Lund University, Sweden,
Ingalill.rahm_hallberg@rektor.lu.se
* The RightTimePlaceCare Consortium partners and their affiliations are listed in Appendix 1
Correspondence
Staffan Karlsson
Department of Health Sciences
Lund University, PO Box 187
221 00 Lund, Sweden
staffan.karlsson@med.lu.se
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Abstract
Aim. The aim of the study was to investigate persons with dementia (PwD) and their
informal caregiver’s experiences of intersectorial information, communication and
collaboration throughout the trajectory of dementia care in eight European countries.
Design. Focus groups were applied in eight European countries; Estonia (EE), Finland (FI),
France (FR), Germany (DE), The Netherlands (NL), Spain (ES), Sweden (SE) and United
Kingdom (UK).
Methods. Participants were 136 in total, and varied between 10 and 27 per country.
Participants were PwD and informal caregivers. Structured interviews were provided in each
country. Content analysis generated a tentative model of information, communication and
collaboration to PwD and their caregivers and in a second step the categories and model was
tested.
Results. The core finding was that the primary focuses of information, communication and
collaboration was the PwD and the family/informal caregivers. Entering and living through
the trajectory of the disease and its consequences was emphasised to be an essential
departure. The relation to the professional care was addressed to establishing a trusting
relationship; the relational perspective and tailor-made and one person or organisation to turn
to; the task perspective. Professional knowledge and commitment, and variation in service
and care adapted to needs were important.
Conclusion. Since focus was on the PwD and their informal caregivers seems family-centred
care be well suited framework for dementia care. A trusting relationship and a specific person
or organisation to turn to seems to be an indicator of best practice as well as adaptation to the
needs of the PwD and the informal caregiver.
Key words: dementia, focus groups, older people, informal caregiver, best practice
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Introduction
It is well known that living with dementia and being next of kin for a person with dementia
(PwD) means having to live through stages that have different characteristics, needs,
challenges and requirements (Johnson et al. 2009). Thus their view of care quality is of
utmost importance as a guidance of how to build up the care chain.
Background
Next of kin is often the primary caregiver for PwD (Schulz & Martire 2004) and knowledge
of what they view is of importance in the contact with professional care is needed. Care and
service may be in combination with formal care from professionals and to a greater or lesser
extent, depending on the stage and the type of symptoms arising along the trajectory of the
disease (Hallberg et al. submitted). How care and services are organised differ between
European countries. Responsibility for health care and social services are often shared
between municipalities and counties (Genet et al. 2011). Informal care could be a substitute
for formal care which is often found in the south of Europe (Bolin et al. 2008) as well as in
the eastern part (Genet et al. 2011), while in the north is viewed more as a complement to
formal care (Genet et al. 2011, Bolin et al. 2008). In addition, legal obligation to provide
informal care varies, southern and eastern Europe have such obligation, while the north has
no such obligation (Daatland & Herlofson 2004).
Informal caregivers are at risk of developing health problems due to the strain of providing
care and coping with the changes in the PwD as the disease progresses (Del-Pino-Casado et
al. 2011). Meredith et al. (2012) and Zabalegui et al. (2008) argue for a more preventive
orientation in supportive interventions related to informal caregivers. Education about
dementia and how to manage the PwD, as well as counselling and respite care have been
found to be effective for informal caregivers throughout the disease trajectory. Such
interventions have a positive impact on informal caregivers, as decreased burden and
depression, improved well-being, ability and knowledge to manage care, and decreased
symptoms in the PwD (Pinquart & Sörensen 2006, Zabalegui et al. 2014). Providing support
to informal caregivers early in the trajectory has also been found to delay or avoid
institutionalization of the PwD (Brodaty et al. 2003, Smits et al. 2007). Thus, it is important
to obtain knowledge about care and services provided from the PwD and their informal
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caregiver’s perspective. Such knowledge will be crucial for the development of tailor made
interventions for improvement of quality of life for the PwD and for their informal caregiver
To date there is no curative treatment for dementia but its progressive nature is well known to
those concerned; patient, informal caregivers and professionals (Johnson et al. 2009). The
main problem relates to cognitive deterioration resulting in communication and difficulties in
managing activities of daily life. There are particular challenges to informal caregivers who
need to understand and interpret the person’s needs. Communication difficulties also have
implications for the development and handling of behavioural and psychological symptoms
of dementia (BPSD) (Edberg et al. 2012). Problems of this kind, screaming, wandering, and
the like may trigger the inability to continue to provide care at home, or even to abuse of the
PwD (Wiglesworth et al. 2010). As the disease progresses the PwD may need constant
monitoring to ensure safety and help with most activities of daily living. At the end stage the
PwD may be totally in the hands of caregivers with respect to these needs and the person´s is
safe (Berg et al. 1998). In addition, behaviour problems and complications from other
diseases such as cancer may develop (Hallberg et al. 1990a, Hallberg et al. 1990b). Thus the
structure of health and social care and service organization, the trajectory of the disease and
the impact it has on the person and informal caregivers, challenges the delivery of
information, communication and collaboration.
Aim
The aim of the study was to investigate PwD and their informal caregiver’s views of
intersectorial information, communication and collaboration throughout the trajectory of care,
from diagnosis to end of life care in eight European countries
This study comprises one of the work packages of The “RightTimePlaceCare” (RTPC; the
EU 7th framework) project aimed at improving dementia care and services for European
citizens with a special focus on the development of best practice strategies for the transition
from home care to institutional long-term care facilities. Countries included in the project are
Estonia (EE), Finland (FI), France (FR), Germany (DE), The Netherlands (NL), Spain (ES),
Sweden (SE) and United Kingdom (UK).
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Methods
Design
Qualitative research using focus group methodology was used during autumn 2011.
Sample
The total number of participants in focus groups was 136, and varied between 10 and 27, with
a median of 17-18 participants per country (Table 1). Number of participants varied between
4 and 10 per focus group. The sampling was were purposeful and included PwD (at an early
stage) and informal caregivers recruited from local services or voluntary sector agencies and
recruited from municipalities known to provide high standard dementia care (rural and
urban), defined from the perspective of the individual country.
Table 1
Ethical considerations
Ethical approval for the study was obtained by the researchers for RTPC in their respective
countries from their health services or university review boards as required by each country’s
law (Verbeek et al. 2012).
Procedure
Focus groups applied similar data collection procedure (Joyce 2008) within the eight
countries and followed an interview guide (Table 2). The interview guide was developed in
collaboration, under the leadership of the last author, with the eight countries representative
and first tested in the Swedish context. Professionals interviewing in the eight countries went
through a training session prior to conducting focus groups. Two professionals in each
country undertook the focus groups, one as a moderator and the other observer/note taker.
The participants were informed about the aim of the study and introduced to the format of the
focus group, that it was a free discussion between the participants that was of importance.
The moderator presented areas for the participants to discuss and encouraged them to share
