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Farm based day care services (FDC) for people with dementia (PWD)
Background
People with dementia (PWD)
As the population of elderly in Norway is growing, the prevalence of dementia will increase (Ramm 2013; Prince, 2013). Today, approximately 78,000 Norwegians are suffering from dementia. In 2040, the number could be double (Ramm 2013; Prince, 2013). Dementia is a progressive condition, and the PWDs will develop loss of function and in the end be fully dependent on others (Engedal and Haugen, 2009).
Around 60-65 % of PWD are living in their own homes, either alone or together with a family member. The remaining 35-40% are living in nursing homes or other long-term care facilities (Engedal and Haugen, 2009). The increased number of PWD will lead to immense challenges of the health care system in the future, but in most cases the families will be caregivers as long as the person lives at home. Being the next of kin caring for a person with dementia on daily basis could be an extremely demanding and a stressful situation. It may lead to different kinds of health conditions as depression or other mental problems, physical morbidity, poor quality of life and mortality (Nortug, 2011; Pinquart & Sørensen, 2003; WHO, 2012).
Care farming
In Norway, Care farms are described as farms that offer adapted and quality based welfare services using farm-based resources to promote health (www. matmerk.no). Due to the structural changes within the agricultural sector, care farming is often part of the increased pluriactivity among Norwegian farmers, since it is commonly offered as an additional business. A recent review of Norwegian research in the area of Care farming shows improvements in several measures of mental health and describe a variety of positive experiences for clients such as coping and social support (Pedersen et al, 2016). This is in line with international research describing services at Care farms as empowerment-oriented and coping-based, and highlighting elements such as the group (as means for social support and inclusion), type of activities
(meaningful), setting (homelike, small-scaled) and the professional (farmer) as important to reach this (Pedersen et al., 2012, Hassink et al. 2010, Ellings and Hassink, 2010, Hine et al., 2008).
Day care for PWD
A national survey conducted in 2014 showed that only about 40 Care farms offer FDC for PWDs (Gjøra et al, 2015). There is a great need for day care services in general since only 17% of the 36,000 PWD living at home has an offer of day care. One of the main strategies in the
Norwegian plan for dementia (HOD, 2007) is to establish day care centers for PWDs in all Norwegian municipalities, and in the new plan (HOD, 2015) the government suggest that by law all municipalities must have an offer of day care for PWDs within 2020.
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Day care for PWD shall provide meaningful activity and coping experiences for the PWD and reduce the care burden for next of kin. The Norwegian plan for dementia 2020, welcomes a further development of day care centers at Care farms. This is also in line with the national action plan for Care farming where offers for PWDs is one out of three prioritized areas (KMD and LMD, 2013). Tretteteig and others (2016) found that day care programs in general could provide a feeling of safety and relief, reduce caregiver burden, and increase motivation for the role as caregiver. However, this experience was depend on the quality of treatment at the day care programs. In a systematic review, Reinar and colleagues (2011) stated that day care could contribute to reduce the incidence of behavioral problems and the use of psychotropic
medication among PWDs, and to decrease the burden for next of kin. However, the review include only eight studies some as the authors stated, with low quality. On this basis, knowledge on how day care services affect health, function and quality of life PWDs is limited.
To our knowledge, the only international study focusing on farm based day care centers for PWDs was conducted in the Netherlands (de Bruin 2009). De Bruin and colleagues compared day care services at Care farms with ordinary day care services at institutions. The study found that PWDs had a higher intakes of energy and fluid, that activities were more frequent, happened more often outdoors, and included a higher level of physical intensity at Care farms compared to institutions. Further, the activities were more individual tailored at the Care farm. To date, minimal research consisting of small samples, has investigated Care farming for people with dementia and their next of kin in Norway (Taranrød 2011; Strandli 2007; Strandli, 2014).
Strandli (2014) conducted seven in-depth interviews with spouses of PWDs attending FDC.
Results showed that the spouses experienced that the service contributed to maintaining identity in PWD and relieve to their care burden. The authors conclude that Care farming could be seen as health promoting to both the PWD and the next of kin.
Person-centered care as theoretical approach for PWDs
Person centered care is a beacon in quality dementia care. According to this approach, it is possible for those suffering from dementia to experience a relatively high state of well-being if the caring environment is capable of meeting the person’s psychological needs for comfort, occupation, attachment, inclusion and identity (Kitwood 1999). In addition to person-centred care, theoretical approaches regarding the link between experiencing and contact with nature, and human health is also in focus. In a recent review, three pathways are suggested for the beneficial effect on health; through enhanced physical activity, through social contacts and stress reduction (Hartig et al. 2014). In a review, Kirkevold and Gonzalez (2012) found that targeted use of garden and garden activities might have a positive influence on function, behavior and well-being among people with dementia. Similar results are seen in animal-assisted intervention, and human-animal interaction is included in the integrative framework for Care farming for PWDs made by de Bruin et al. (2010).
Main aim of the study
The main aim of the study is to provide knowledge for innovative quality-based development of FDC for PWD.
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Research questions and research design
Two main research questions have been identified;
(1) What are the experiences and benefits of FDC for PWD and their next of kin,
(2) What are the key unique elements on the farm that make a farm suitable for providing high quality day care services?
To answer to the research questions, a triangulation of different theories and methods that can ensure valid data and balanced knowledge will be used (Silverman, 2005), and both an empiricist and a constructivist view on knowledge will be applied as theoretical foundation. This
triangulation or mixed-methods are defined as the use of multiple methods or perspectives in the same study (Olsen, 2004). The purpose of triangulation is to overcome bias that occurs when data are obtained from a single method. The possibility of multiple viewpoints into a complex reality like farm based day care services for elderly with dementia, and to access different facets of a phenomenon is a clear advantage (Foss & Ellefsen, 2002).
The project is planned as a prospective trial and organized in a main study with adjacent sub- projects. A 24 month longitudinal single group design is preferred for the main study as it can reveal the impact of FDC for the users and next of kin, including the importance of care burden for predicting when PWDs are transferred to other care services. There will be used standardized instruments comparative to an ongoing Norwegian research study, the ECOD (Effects and costs of a day care centre program designed for people with dementia-A 24 month controlled study), also collecting data among both people with dementia and their next of kin. Data from ECOD will be used as control, and the possibility to hold the data against each other increases the relevance of the FDC study in relation to research on dementia care.
Research question 1; In the investigating of the potential benefits of FDC for PWD and their next of kin the focus will be on person-centred care by bringing in new contexts and resources in the care concept. To answer the research questions, both quantitative and qualitative data will be collected.
To study the benefits of FDC over time we will use a single group longitudinal
quantitative design including multiple standardized measures, and include explanatory mediators related to the farm context.
Care burden, health and quality of life for next of kin will be assessed with a longitudinal design including multiple standardized measurements.
Interviews with PWD and their next of kin and participatory observation will be central to capture their experiences with FDC and the process of leaving FDC. That is valuable, because research on PWDs attending FDC services is relatively sparse.
Research question 2; To study key unique elements of FDC that makes farm setting suitable for providing high quality day care services, several short term studies will be used. This gives the opportunity to explore specific elements of the farm context and how they contribute to create an environment that facilitate person-centered care for PWDs.
The first study will investigate the impact activities in a group at FDC in relation to well- being and social interactions, by using video recordings.
Next, differences in physical activity level and sleep quality between days spent at the farm and days spent at home for PWD’s, will be explored using an Actigraph
(www.actigraphcorp.com).
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Last, possible additional value of FDC services for PWD will be explored by comparing the farm care environment with similar institutional services using a standardized mapping tool, MEDLO, that researches the care environment together with performed activities, engagement and mood.
Recruitment and research setting
Care farms providing FDC for PWD will be recruited to the project from municipalities trough out the country, a present estimated number of farms is 35. Updated information of the number and location of care farms will be obtained from the agricultural department at the County Governor. For the longitudinal study all PWDs who have attended the FDCs for at least 3 weeks and their next of kin will be invited, an anticipated number of participants is 150 PWDs and 150 next of kin. For the sub-studies a representative convenience sample will be selected.
A procedure is developed (Enclosure 01) for evaluation of capacity to give informed written consent. For users of daycare centers the first contact will be taken by leader of the day care center in collaboration with the farmer and they will perform the evaluation. The users with sufficient capacity will be informed about the project and asked to give written consent
(Enclosure 02). For users with reduced capacity, next-of-kin must take this decision on behalf of the elderly and give a written consent (Enclosure 02). Next of kin to participants at FDC will receive information and be asked to give a written consent to participate to participate as next-of- kin (Enclosure 03). See flow chart (figure 1, in Norwegian) for procedure of recruitment.
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Figure 1, Flow chart of procedure of recruitment.
Kontakt med dagtilbud på gård i kommunen.
Informasjon om studien.
Informasjon om studien til aktuelle kommuner med dagtilbud til personer med
demens på gård, forespørsel om deltagelse
i studien.
Leder av dagtilbudet vurderer aktuelle brukere
og pårørende som tilfredstille inklusjonskriteriene.
Leder av dagtilbudet gir informasjonskriv til bruker
og pårørende til gjennomlesning.
Leder av dagtilbudet formidler kontakt-
informasjon til kartlegger.
Kartlegger kontakter deltakerne for avklaring om deltagelse i studien.
Kartlegger innhenter
skriftlig samtykke. Inkluderes i studien.
Inkluderes ikke i studien.
Ja
Nei
Ja
Inkluderes ikke i studien.
Nei
Leder av dagtilbudet forespør om bruker og pårørende ønsker å bli kontaktet av kartlegger om deltagelse i studien.
Nei
Inkluderes ikke i studien.
Steg 2 Innhente samtykke - brukere og pårørende
Leder av dagtilbudet, foretar en
samtykkevurdering- av bruker (egen prosedyre).
Nei
Inklusjonskriterier:
Personer med demens i dagtilbudene og deres pårørende som er over 18 år, lever sammen med eller treffe personen med demens gjennomsnittlig minst en gang i uken.
Ja Ja
Steg 1. Informasjon og kontakt med gård, kommune, bruker og pårørende
Ja
6 Inclusion criteria for PWD:
User of FDC.
Attended the FDC for at least 3 weeks
Lives together with next of kin or meet him / her regularly, minimum once a week in average.
Exclusion criteria:
Next of kin refuse to participate Inclusion criteria next of kin:
18 years or older
Lives together with the PWD or meet him / her regularly, minimum once a week in average.
Sub projects will include the following number of participants. Each person will not be asked to participate in more than two sub projects (the assessments are described here to simplify the presentation):
To provide an extended understanding of the influence FDC have on PWD and their daily living, individual in-depth interviews and “walk and talk” observation of 8-10 PWD will be conducted. Preliminary interview guide (Enclosure 4).
To assess the importance of setting personal goals, which is highly relevant for
stimulating person centered care for PWDs, 30 participants taken from the total sample will be recruited after they have completed the longitudinal study to an intervention using the Goal attainment scale (Rockwood et al., 2003) (Enclosure 5).
To provide an extended understanding of how the PWD’s participation in FDC influence daily life for the next of kin, and to understand important factors of a functioning service for the next of kin, 8-10 individual in-depth interview will be conducted. Interviews will be conducted at two time points with next of kin. Preliminary interview guide (Enclosure 6).
To investigate the next of kin experience of the process when PWD stop attending FDC, transferring to other care services, individual in-depth interviews with 8-10 next of kin will be done. Interviews will be conducted at two time points; one interview when there are plans for referral to other care services, but before the PWD quit, and a follow-up interview after the PWD stops attending FDC. Preliminary interview guide (Enclosure 7).
To understand the impact of participation in group activities on well-being and social interactions, 30 PWDs attending FDC at 5 different farms will be asked to participate once in video recording during group activities a whole day at the farm (Enclosure 8).
To compare differences of physical activity, including outdoor activity, and quality of sleep for PWD between days spent at the farm and days spent at home, 50 participants at 10 different farms already included in the study will be asked to once during participation use an Actigraph (www.actigraphcorp.com) over seven continuing days (Enclosure 9).
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To compare person centered care qualities of the farm environment with care environment at similar institutional services, 25 participants at five FDCs already included in the study and 25 participants of five units at institutional day care centres services will be asked to participate and observed using MEDLO (de Boer et al., 2016) (Enclosure 10).
Intervention content
Farm based daycare activity (FDC) include all naturally occurring activities at the farm which is suitable for the users to attend. Examples could be caring for the farm animals, garden activities, outdoor recreational activities (e.g. walks in the nearby surroundings of the farm, boat trips, trips with horse and carriage, picking flowers), and indoor recreational activities (e.g. leisure
activities, wood work, preparing meals, baking). As for institutional day care activities transportation of the users to and from the venue and meals are a part of the offer.
The health authorities in the municipally are in charge of daycare center at the farm in the same way as for institutional care services, and they hire the farm and the farmer as defined in an contract between farmer and municipal authorities, also describing content of the service. If appropriate, the farmer is in charge for the activities on a day-to-day basis. However, municipal health care personnel have always the formal responsibility. Quality assurance of the farm environment are taken care of by the national agency Matmerk (www.matmerk.no).
Assessments for the longitudinal study
All assessments in table 2 and 3 (Enclosure 11) will be filled in by the participant and/or next of kin alone or during interviews with one or two persons from the researcher team. All persons in the researcher team will attend training course to develop shared knowledge in doing the interview. Persons in the team will also follow an interview guide which will be developed and supervision will be given from senior members of the team during the data collection period.
Table 1. Instruments used in the longitudinal study of PWD Construct Instrument Domains Information
about FDC, socio
demographics, medications and checklist diagnose
Information about attending FDC
Age, gender, marital status, level of education, living conditions
Diagnosis, functioning (physically and mentally)
Hobbies / interests, relationship to /experience with farming, activities at the farm
Medications
Diagnosis for research purpose Health care
resources
Resource Utilization in Dementia (RUD)
Use of healthcare resources (Wimo et al., 2009)
Social support Oslo social support (OSS-3)
The measure have 3 items related to social support, (Dowrick, Casey and Dalgard, 1998).
8 Physical
functioning
The General Medical Health Rating
(GMHR)
A rapid global rating scale of medical comorbidity in dementia patients (Lyketsos et al., 1999).
Well-being WHO-Five Well- being Index (WHO-5)
5 items questionnaire on subjective well-being (Bech et al. 1996).
Cognitive functioning
Montreal Cognitive Assessment (MoCA), Version 7.1
A one-page 30-point test measuring the degree of dementia (Nasreddine et al., 2005).
Quality of life Quality of Life-
Alzheimer's Disease (QoL-AD)
The measure has 13 items, rated on a 4-point scale, with the score ‘1’ being poor and ‘4’ being excellent.
(Logsdon et al., 1999).
General health EuroQol-5D + VAS A standardized instrument for use as a measure of health outcome (Kunz 2010).
Depression Montgomery Aasberg Depression Rating Scale (MADRS)
A 10-item interview-based questionnaire screening for depressive symptoms. Each item yields a score of 0 to 6. The overall score ranges from 0 to 60
(Montgomery and Aasberg, 1979) Anxiety Rating of anxiety in
dementia (RAID-N)
The scale consists of 18 statements measuring anxiety (Shankar et al. 1999,
Coping skills Locus of Control (LoC)
The scale consists of 17 statements, which the respondent rates from 0 =strongly disagree to 6 = strongly agree. Seven of the items rate the degree of internal locus of control and 10 items rate the degree of external LoC (Craig et al., 1984).
Physical functioning
Time up and go (TUG)
A measure of physical mobility (Podsiadlo and Richardson, 1991).
Cognitive functioning
The Anosognosia Rating Scale (REED)
One-item questionnaire assessing the level of insight in the deficiencies (Reed et al., 1993).
Psychological functioning
The Neuropsychiatric Inventory scale (NPI), 10 item
Scoring neuropsychiatric symptoms by the caregiver based on a standardized interview administered by the researcher. Assessing 10 behavioral domains common in dementia. Each domain is scored for frequency, severity and associated caregiver distress (Cummings et al, 1994).
Depression Cornell A 19-item clinician-administered instrument, each item yields a score of 0 to 2, the letter “a” is used for not possible to score. The overall score ranges from 0 to 38 (Alexopoulos et al., 1988).
Physical functioning
Function in everyday life activities (PADL and IADL
Measurements for personal and instrumental
activities of daily living (Lawton and Brody, 1969).
Cognitive functioning
Clinical dementia rating (CDR)
Structured-interview protocol assessing cognitive and functional performance in six areas: memory,
orientation, judgment & problem solving, community affairs, home & hobbies, and personal care. A scale used to quantify the severity of symptoms of
dementia (Huges et al., 1982, Morris, 1993).
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Table 2. Instruments used in the longitudinal study of next of kin Construct Instrument Domains
Socio
demographics
Age, gender, occupational status, kinship with PWD
Information about attending FBD (date of start, hours /week)
Information about other health care services (type, hours / week)
Information about other support services (individual consultations about their own situation, school for family caregivers, support groups, economy)
Information due to knowledge about the service before start. Types and sources.
Initiating transition of care
(ITC) One question measurement: “If the situation stays as it is now, how long will you be able to cope with the care?” (Kraijo et al. 2014).
Social support Oslo social support (OSS-3)
The measure have 3 items related to social support, (Dalgard et al. 2006).
Physical functioning
The General Medical Health Rating (GMHR)
A rapid global rating scale of medical comorbidity in dementia patients (Lyketsos et al., 1999).
Health care resources
Resource Utilization in Dementia (RUD)
Use of healthcare resources (Wimo et al. 2009).
Quality of life Quality of Life- Alzheimer's
Disease (QoL-AD)
The measure has 13 items, rated on a 4-point scale, with the score ‘1’ being poor and ‘4’ being excellent.
(Logsdon et al., 1999).
Depression and anxiety
Montgomery Aasberg
Depression Rating Scale (MADRS), and the anxiety part of Hospital anxiety
& depression Scale (HAD-A)
MADRS is a 10-item interview-based questionnaire screening for depressive symptoms. Each item yields a score of 0 to 6. The overall score ranges from 0 to 60 (Montgomery and Aasberg, 1979),
HAD-A subscale is a self-assessment scale with 7 questions (number 1, 3, 5, 7, 9, 11 and 13) regarding anxiety symptoms. Each item yields a score of 0 to 3.
The overall score ranges from 0 to 21.
(Zigmond and Snaith 1983) Care burden Relatives stress
scale (RSS)
The scale consists of 15 items each rated from 1 to 4 (1
= not at all, 2 = rarely, 3= frequently/quite a lot, 4
=always). A score above 23 on the RSS indicates an increased risk of clinically significant psychological distress (Green et al, 1982)
Quality of life SF-36 The measure has 36 health related question, which after scoring will be translated to a scale from 0 to 100, where 0 represent worst possible health and 100 best possible health. Norwegian version by Loge et al. (1998).
Well-being WHO-Five Well- being Index (WHO-5)
5 items questionnaire on subjective well-being (Bech et al. 1996).
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Time points of measure
For all participants the first assessments will be conducted at inclusion. For some this will be 3 weeks after they started at FDC. The following time points of measure will be after 6 months and 1 year after inclusion in the study. All participants leaving FDC will be contacted and asked some questions regarding why they quitted (enclosure 12), participants wanting to drop out of the study will be asked one question regarding the reason (enclosure 13). Demographics and diagnoses will only be recorded at baseline.
Analysis of data
Statistical procedure will be performed using SPSS version 23. The level of significance will be set at 0.05. Descriptive data will be reported for variables of interest. All participants will be included in the analyses (Benestad & Laake, 2004), multivariate regression analyses will be used to control for confounders (Altman, 1991). Appropriate statistical methods will be used
analysing data (e.g. Mixed-models, RM-anova, multiple regression and chi-square). Longitudinal data from PWDs will be compared to matching anonymous assessments from the ECOD study.
Video recordings will be analyzed according to the specified behaviours using the Observer 9.0 (Noldus, 2009). Semi-structured interviews based on an interview guide will be tape recorded, transcribed and analyzed using qualitative content analysis methods in line with Graneheim and Lundman (Graneheim & Lundman 2004).
Project group, steering group and advisory board
This study is a part of a larger research project with researchers from four cooperation partners;
Norwegian University of Life Science (NMBU), Norwegian National Advisory Unit on Aging and Health (Aging and Health), Norwegian Institute of Bioeconomy Research (NIBIO), Food and Agriculture Division, and Centre for Rural Research (CRR) forms a project group. The same institutions are responsible for appoint of members to a steering group with main people
responsible from NMBU, Aging and Health, CRR and NIBIO. This research protocol is from the study that include health information on participants and where NMBU, and Aging and Health are responsible partners. For the study performed by NIBIO and CRR an application will be sent to Norwegian Centre for Research Data.
Central to the project is an advisory board extending the research group with stakeholders involved in FDC for PWD and international partner:
Norwegian Health Association represent the PWD and their relatives and will bring their perspective to the project.
Two FDC farmers which both have run FDC programs for PWD for many years.
Coping skills Locus of Control (LoC)
The scale consists of 17 statements, which the respondent rates from 0 =strongly disagree to 6 = strongly agree. Seven of the items rate the degree of internal locus of control and 10 items rate the degree of external LoC (Craig et al., 1984).
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The Norwegian Farmers’ Union with the head of the Union’s board for care farming.
Centre for Development of Institutional and Home Care Services – Vestfold (USHT- Vestfold) will bring on view points from the health care providers and municipality perspective.
Matmerk which has the national responsibility for the quality and accreditation system for care farming and promotes care farming through written communication.
The County Covernor of Vestfold, division of Agriculture and Food have been supporting development of care farming services both in general and FDC for PWD
The Count Covenor of Oslo and Akershus, division of health will contribute with views the role FDC for in the day care for PWD in the years to come.
National Institute for Public Health and the Environment, Centre for Nutrition, Prevention and Health Services, The Netherlands, Dr Simone de Bruin. She has done research om FDC for PWD in the Netherlands and will contribute with her experience.
Financing
Norwegian research council, grant number: 255033/E50
Time schedule
Task From year From quartile To year To quartile
Employ two PhD students 2016 1 2016 2
Ethical approval 2016 1 2016 2
Recruitment of participants 2016 3 2017 3
Collection of longitudinal data 2016 3 2018 3
Collection of qualitative data 2016 3 2018 2
Collection video and activity data 2017 1 2018 2
Data analysis 2018 2 2019 1
Writing articles 2018 2 2019 3
PhD - thesis submission 2019 4 2019 4
Information activity
At least 15 scientific papers will be published in international peer-reviewed journals. This includes a scoping review article related to health benefits of FDC for PWD where publications from the present project proposal and lessons learned will be central. In order to describe
existing information of FDC for PWDs in Norway, we will systematically investigate web-based and written information of FDC published through official channels in the municipalities
offering FDC services for PWD. In addition, results from the project will be communicated through popular scientific papers and oral presentations at conferences and other forums. We will also establish a visual profile for the project, and a webpage where information about the project will be published during the whole project period. Last, written information such as pamphlets, brochures etc, visual information and other web-based material promoting FDC for PWDs will be developed during the project period, including making a film about FDC for PWDs.
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Ethical considerations
An application for etichal permission has been submitted to The National Committee for Medical and Health Research Ethics in Norway. They considered the project to be a quality development of established health services, and therefore the project is applicable to the Health Research Act. The project will be submitted for evaluation to Data Protection Official for Research. All principles in the Helsinki declaration will be followed. In this study some of the participants will be incapable of giving informed consent for own participation. To recruit participants with reduced cognitive capacity could be ethical challenging and a procedure is developed for evaluation of capacity to give informed written consent. Trained municipal health care personnel will perform the evaluation. Participants with sufficient cognitive capacity will be informed and asked to give written consent. For participants with reduced capacity we will inform the next-of-kin and ask for written consent. The voluntary principles and the possibility to withdraw from the project at any time will be emphasized, and personal confidentiality will be guaranteed all participants. It will also be underlined that withdrawal or drop out from the study will have no negative consequences for the further use of farm based daycare center. With respect to the cognitive challenges PWD meet and to safeguard the participants, the data collection will take place in a face-to-face interviews conducted by trained personnel / researchers.
Usefulness of the project for the participants:
o A possible result of the project could be a development of this sort of day care activity on a common basis, expanding the range of activities for elderly with dementia.
o DCM is used as tool to enhance the quality of dementia care for each individual user, and will give health professionals important information about each participant’s well-being.
o For relatives the individual interviews could give an opportunity to share their experiences and concerns about living with an elderly person with dementia.
Harm of the project for the participants:
o Demanding and time consuming registrations could be a negative factor during the project.
o Some of the measures like video recording and ActiGraph could be considered invading.
o For relatives some of the questions could be a source for negative thoughts and feeling, and the interview could be a demanding experience.
Privacy:
o Sensitive information about the participants will be gathered, both as socio- demographic information and via standardized questionnaires, and this will affect the participants’ right to privacy.
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Informed consent:
o In this study some of the participants will be incapable of giving informed consent for own participation, and a procedure is developed for evaluation of capacity to give informed written consent. For users of daycare centers health care personnel will perform the evaluation. The patients with sufficient capacity will be informed about the project and asked to give written consent. For patients with reduced capacity, health personnel and/or the next-of-kin must take this decision on behalf of the elderly and give a written consent. To be included in a project without consent is ethically challenging. However, we do expect that the participants are capable to express their opinion regarding the participation in each session, thereby securing the possibility to withdraw from the setting and intervention.
Withdrawal or drop out:
o The voluntary principles and the possibility to withdraw from the project at any time will be emphasized for all participants and relatives. It will also be
underlined that withdrawal or drop out will have no negative consequences for the care or the participation at the daycare center. A questionnaire asking for reasons for drop out will be voluntary to fill in.
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