The CARE intervention has been developed by an interdisciplinary research group with participants from XX University and XX Municipality, comprising people with backgrounds in public health science, philosophy, and literature studies.
It has been developed in two phases: First, we conducted a needs assessment that investigated the occurrence of ethical issues in dementia care and the need for an intervention to support people living with dementia and their carers in managing such issues. Second, in a design phase, we developed the CARE intervention to meet identified needs (see figure 1).
Phase 1: Needs assessment
In this phase in two studies we explored what ethical issues and what support, carers and people living with dementia have: First, in an ethnographic study we investigated how ethical issues emerge among carers and people living with dementia in two nursing homes and one day care center in XX municipality. Second, we conducted a qualitative thematic synthesis of guidelines distributed to people living with dementia and their family carers in Denmark.
An ethnographic study
To explore how ethical issues emerge in dementia care and are perceived by people living with dementia and their carers we conducted an ethnographic study of dementia care at three different care facilities in the municipality of XX: an activity centre, a somatic nursing home and a nursing home specialised in dementia.
The study comprised observations and interviews with people living with dementia and family and professional carers focusing on generating insights into which and how different ethical issues appeared in these groups, which, taken together represent a full dementia trajectory. Data was collected in November – December 2020 and again in February 2021. The study comprised a total of 39 observations lasting from 1.5 hours to 8 hours, as well as the following interviews: four interviews with people with early-stage dementia, eight interviews with family carers, and five focus group interviews with professional carers (n = 17). Interviews were conducted using a semi-structured interview guide informed by ethical literature on dementia(3). All interviews were subsequently transcribed ad verbatim. Observations were conducted using an observation guide informed by ethical literature on dementia(3). All data from the observations were imported to the qualitative analysis software programme NVivo 12 and coded using thematic analysis(22). The analyses of the ethnographic study showed that carers and people living with dementia face a number of ethical issues in their everyday lives, including how can you talk to a person about opening up about their illness to those around them, if the person does not want to and how to respect self-determination and privacy etc. The full design and results of this study are forthcoming in a separate publication.
A qualitative thematic synthesis
To broaden and further qualify the knowledge of the occurrence and variety of ethical issues in the life with dementia, we also completed a qualitative thematic synthesis of guidelines to people living with dementia and family carers. The aim was to clarify what (if any) guidance people with newly diagnosed dementia and their family carers receive to manage ethical issues, and what needs remain unmet. Data were collected from January to March 2021.
The synthesis included 653 references; 555 remained after duplicates were removed. Data were selected based on formal criteria, such as publication year, target group and public availability. The data were controlled for content of ethical issues and recommendations. After screening for formal inclusion criteria, 59 references remained, and applying qualitative control for content of ethical issues and recommendations, it ultimately resulted in the selection of a sample of 15 guidelines. Data was imported to NVivo 12 and analysed with content analysis. The analyses identified four specific subcategories of prevalent ethical issues: being concerned with issues arising in conjunction with disclosure of private or sensitive matters; vulnerability and acceptance of dependence; changes in what is perceived as dignified behaviour; and decision-making and autonomy. The results of this study have been published in Dementia(23).
Phase 2: Design
The design phase of the CARE intervention was conducted in two separate stages: First, we outlined an intervention to address the need for ethical support identified in the needs assessment. Second, we prima facie validated and refined this intervention in workshops with people living with dementia, professional and family carers.
Outlining the intervention
The ethical issues we uncovered in our needs assessment were, to a large extent, shared by various target groups in dementia care, including people living with dementia, professional and family carers(24). Hence, we decided that the intervention should be directed at all three target groups and the setting of the intervention should be day centres, frequented by people with dementia living at home, and nursing homes that house people with late moderate and severe dementia (see table 1 for an overview of which target groups were addressed in which arena).
Table 1 Target groups and arenas
|
Target groups
|
Arenas
|
1
|
People living with dementia living at home and their family carers
|
Day Center
|
2
|
Family and professional carers
|
Nursing Home
|
3
|
Professional carers
|
Nursing Home
|
Because ethical issues occur when moral principles conflict, we decided that the intervention should be designed as a workshop format where people living with dementia and carers could meet and deliberate on how to solve such conflicts. Also, we decided that the ethical issues to deliberate on should be presented as concrete cases rather than as abstract problems. While we considered different types of interventions, e.g. online or written communication material to people living with dementia and their carers, we decided that it was important to actively involve them face-to-face in deliberations on how to manage ethical issues, thus fostering peer-interaction and cooperative problem solving (25, 26).
To facilitate a thorough discussion of the ethical issues, we decided to present them through literary cases that express actual life situations (27). Drawing on the tradition of narrative medicine, we asserted that using literary texts would be a useful way of fostering improved understanding of mutual experiences and values in dementia care(28). To identify literary cases that exemplify the identified ethical issues, we conducted an extensive literary study of 15 Danish and Anglophone works of contemporary prose, poetry, autobiographies, and fiction dealing with dementia. 10 works were autobiographical, and five were fictional. Criteria for selecting these works included works written from various viewpoints to gain insight into life with dementia from the perspective of care workers, people living with dementia and their next of kin, and works that poignantly describe life with dementia and directly engage without necessarily providing solutions to ethical issues in relation to dementia care. After reading through the books, we selected six works in which we identified text excerpts for use in the intervention (see table 2 for a list of the books we have used).
Table 2 List of books from which we have used text excerpts
Title
|
Author
|
Type
|
Publication year
|
No man's land*
|
Kirsten Thorup
|
Fiction
|
2004
|
Thawed snow and forsythia*
|
Thomas Bredsdorff
|
Autobiographical
|
2017
|
Somebody I used to know
|
Wendy Mitchell
|
Autobiographical
|
2018
|
Gratitude
|
Delphine de Vigan
|
Fiction
|
2019
|
Dementia, dilemmas and star moments*
|
Lone Carmel and Annette Thuesen
|
Autobiographical
|
2020
|
I still see you*
|
Julie Rubow
|
Autobiographical
|
2020
|
*Danish book titles translated by us
Prima facie validation
Subsequently, this outline of the intervention was validated in three workshops with professional and family carers and people living with dementia.
The first workshop was held with professional carers (n = 10) in September 2020. The aim of the workshop was to test the relevance of the issues identified in the ethnographic study and, if necessary, to adjust them and to test whether literary cases describing ethical issues in dementia would be perceived as a suitable method for conversing on these issues. The professional carers were all experienced in working with people living with dementia. Some had backgrounds as nurses and social and health assistants while others were assistants with no educational background in the field of health. They went from having a few years to more than ten years of experience working with people living with dementia. The workshop lasted two hours. Four researchers and a coordinator from XX municipality participated in the workshop.
The second workshop was also completed in September 2020 and was held with family carers (n = 12). The aim of the workshop was to investigate whether the ethical issues earlier identified in the needs assessment were relevant to this target group. The participants´ experience with dementia spanned from an adult child whose mother had recently died from dementia to a woman whose husband had only recently been diagnosed with Alzheimer´s disease. Three researchers and a coordinator from XX Municipality participated in the workshop. One of the researchers facilitated the workshop while the two others continuously took notes. The workshop lasted two hours.
The last workshop was with people with early-stage dementia (n = 6). It was completed in January 2021. The aim of the workshop was to investigate the relevance of developing an intervention aimed at supporting management of ethical issues in dementia and whether the use of literary cases presented a suitable method for conversing on these issues. The workshop was conducted at a day centre for people living with dementia. In addition to the six persons with dementia a professional carer from XX Municipality also participated in the workshop. Two researchers conducted the workshop. The workshop lasted 45 minutes