Well-being of people with dementia through lived spirituality - an exploratory study

The increasing aging of society has led to an increase in age-related diseases in recent years. This particularly includes dementia. The term comes from Latin and describes the absence (prefix: de-) of the ability to think (suffix: -mens). “Dementia” literally means “without reason”. Dementia is not only accompanied by cognitive and mnestic losses, but also by the loss of basic orientation and everyday skills that were previously taken for granted (Stoffers 2016: 7). The term dementia does not include a specific disease, but rather an acquired condition caused by organic brain damage (Stoffers 2016: 8). In Germany, there are currently around 1.7 million people living with a diagnosis of dementia (Thyrian et al. 2020: n.p.), with Alzheimer's dementia making up the majority of the diseases with around 60% (Stoffers 2016: 9). So far there is little knowledge regarding the triggering risk factors, but different expert assessments and study notes show (at different levels of evidence) that different prevention approaches could be useful for avoiding dementia. These include, among other things, increasing exercise behavior, quitting smoking, or reducing alcohol consumption (WHO 2019: xii-xiii). Social contacts as well as intensive cultural and sporting activity also appear to be protective factors against the development of dementia (Förstl, Förstl 2020: n.p.).

>> Due to the limited prevention options, the focus is on improving therapy options and the care and support of people with dementia, both today and in the future. While pharmacological therapies can only alleviate symptoms in people with dementia, psychosocial approaches have proven to be useful in maintaining cognitive and everyday practical skills and improving psychological well-being and quality of life (Stoffers 2016: 22). The German “S3 Dementia Guideline”, which deals with psychosocial interventions, also recommends the use of a broad spectrum of therapy and support and presents psychosocial interventions as a central and necessary component in the care of people with dementia and their relatives. The approaches and The goals of these procedures are much broader than those of pharmacological therapies (AWMF 2016: 84).
Since hardly any preventive and causal therapies are known, the main goals must be to improve the well-being and quality of life of those affected. However, both (professional) carers and relatives face the challenge of actually noticing the positive moments of those affected and recognizing these as quality of life and supporting them in a further step (Schmidhuber 2016: 273). It is not primarily about measuring quality of life objectively, but rather about perceiving the subjective quality of life of people with dementia in order to then be able to respond individually to the needs of those affected (Schmidhuber 2016: 276). However, even instruments specifically developed for the objective assessment of quality of life, such as Dementia Care Mapping (DCM), do not yet show sufficient evidence in their application in terms of their effectiveness in assessing and sustainably improving quality of life or in improving the way in which the challenging behavior of those affected is dealt with. Here too, there is a need for further research in the implementation of standardized instruments to assess and improve the quality of life of people with dementia (Dichter et al. 2016: 6-8).
Since many of those affected can no longer organize their daily routine independently, familiar habits or certain rituals and traditions (such as evening prayers, festivals or memorial days, etc.) also help to create a structured daily routine and provide security (Stoffers 2016: 42) in order to contribute to an improved quality of life.
The “dementia.enthusiastic” study described below aimed to generate further insights in the context of the well-being and quality of life of people with dementia. The focus should be on spiritual/religious rituals that are regularly carried out with those affected in order to be able to record and interpret their effects on the behavior and well-being of the test subjects. When selecting and implementing the measures, the individual biographies and preferences of those affected should also be taken into account.
At the end of the study, results should be achieved that can provide further knowledge in the care of people with dementia and identify the need for further research.
methodic procedure
The project was funded by the Ministry of Labor, Health and Social Affairs of North Rhine-Westphalia and initiated by the nursing service for the elderly, sick and family (AKF) in Cologne-Rath/Heumar. For the operational implementation of the study, the “demenz.begeistert” project team was formed (see https://www.akf-pflege.de/demenzbegeistert/), which accompanied and supervised the study throughout its entire duration.
The study duration from the start and end of data collection was 6 months, with the inclusion phase covering the period from February 2019 to April 2021. In some cases, data collection phases longer than 6 months were recorded if participants voluntarily completed a longer period of participation. Initially, the “demenz.begeistert” team only contacted/recruited those affected by home care in the immediate regional area - but the recruitment was then expanded to include nationwide and inpatient care facilities (the study is clearly nationally oriented). Recruitment was independent of religion and the participants were closely supported and advised by the “dementia.enthusiastic” team on all questions that arose.
To implement the study, tandem pairs of those affected and the responsible carers were recruited. If they were willing to participate, the participants were informed about the contents and implementation of the study and a written informed consent was obtained. On the one hand, the study had an exploratory character and was therefore not based on hypothesis tests that could be derived from existing literature. On the other hand, in addition to hybrid questions or open questions, descriptive analyzes including context analyzes were also carried out, making it a combined methodological approach. It was not possible to form a comparison group, which would have been necessary to quantify intervention effects. Before and after comparisons could not be methodically implemented due to the progressive progression of dementia. An exploratory research approach should provide knowledge that enables theoretical explanations - this is particularly the case with previously little-researched phenomena or contexts (Kleemann et al. 2009: 24, 147) as well as in the present study on the effects of religiosity/spirituality on people with dementia.
The data collection consisted of two different questionnaires: one questionnaire was intended to record the essential demographic information, living conditions and characteristics of those affected (gender, age, existing children, marital status, denomination and whether the faith is practiced, etc.) and was used once at the start of the study. Another questionnaire, which was also offered in Turkish, was aimed at the number and scope of meetings as well as the activities implemented and their impact on the person concerned and was to be completed monthly. The second questionnaire consisted of a total of 8 questions. In addition to the frequency of visits, the duration of the visit was also asked. In addition, the existence of any religious interior design elements and the activities carried out were recorded. The relevant activities in private and public spaces were each collected as part of a hybrid question in order to be able to provide further information in the form of a free text field in addition to the 7 activities listed.
This questionnaire was also answered in the 6 subsequent months to allow for possible changes over time. The following measures could be selected:
• Music and singing
• Prayer/meditation
• Creative design
• Bake cook
• Reading/reading aloud
• Visiting places of worship
• Participation in community festivals
• Other:… (free text field)

The answer category “Other” was designed as an open answer option. The response categories were used in the form of so-called Likert scales with 5 categories (“always”, “often”, “sometimes”, “rarely” and “never”). These are therefore ordinal measurement levels. Regarding the observed effects of the measures, questions were asked about the effects observed during, at the end and after the measure. These were specifically:
• Change in mood before/during/after
• Attention of the person concerned during the measure
• Aggressive (i.e. challenging) behavior
• Anticipation on the part of those affected
• Harmonious day/night rhythm
• Changes in the participant? (free text field)

This questionnaire was also made available in a Turkish version in order to address the largest group in Germany with a Muslim background as best as possible and to include it in the study.
In addition, in the spirit of participation, it was important for the demenz.enthusiastt team to offer a low-threshold questionnaire with “smileys” that was specifically adapted to the cognitive abilities of people with dementia. This offer was used by some of the people with dementia who were accompanied, mostly with the support of a carer or relative.
As a theoretical basis and practical guide, all participants in the study as well as other interested parties and multipliers were given an elaborately designed, 60-page brochure with general information on the topic and the study as well as a detailed practical section with examples of spiritual everyday life and milieu design for members of the 5 major world religions ( Christianity, Judaism, Islam, Hinduism, Buddhism) provided free of charge.
The completed questionnaires were recorded digitally in Excel 2010 and evaluated in Excel and SPSS version 20. In addition to purely descriptive analyzes of the individual questions with a view to frequency distributions as well as position and scatter parameters (mean, standard deviation), context analyzes were also carried out. The connection analyzes were essentially carried out between:
• Characteristics of those affected and measures chosen
• Characteristics of those affected and observed effects
• chosen measures and observed effects

Depending on the scale levels, mean comparisons were carried out in the form of Mann-Whitney U tests for independent samples (depending on characteristics of the participants such as gender, the existence of a spouse or children, or whether the faith was lived in advance ), as well as Chi² tests were carried out (when examining dependencies on categorical variables such as living situation, marital status, activities carried out, etc.). In addition, Spearman correlation coefficients between ordinal variables were determined and checked for significance (Likert scales for the activities performed and the effects observed). All test procedures were based on an error probability of α=5%.
Results
In the following, some descriptive results of the study population are presented (Chapter 3.1) and then some key results of the context analyzes are listed (Chapter 3.2) and practical experiences from project implementation are described.
The study population has a total of 50 participants, whose development over time was recorded on a monthly basis. The majority of those affected were female (86%) with an average age of 85.8 years and widowed (70%). The majority live in a residential care facility (62%) and receive visitors once or more frequently per week (approx. 76%). The faith is actively lived by 60% of those affected when they start their studies. Table 1 below lists the main characteristics of the population.
The majority of participants used religious interior design - particularly religious symbols placed in the living area (52%). Only about a quarter of the participants (26%) had no religious interior design whatsoever (see Figure 1). 38% of the participants even had a separate spiritually designed area.
When asked about the activities carried out, only the activities from the first monthly survey are listed below. There were fluctuations in the proportions over the course of the survey, but these cannot be interpreted in terms of content, particularly due to the drop-outs over time. For the purpose of better readability, only the 3 Likert categories “always”, “often” and “sometimes” are shown. The activities “music and singing” and “reading and reading aloud” were used most frequently - 48% of those surveyed said they had carried out these activities “always” - a further 26% or 16% gave the answer “often”.
The effects observed on the affected person during the implementation of the activities were largely documented as clearly noticeable by the nurses/carers. This shows that a majority of those affected “often” (41%) or “always” (32%) experienced a positive change in mood during the activity. Only in approximately 9% of those affected was a corresponding change “rarely” or “never” noticeable (see Fig. 3).
In some of those surveyed, a persistent positive change in mood was also clearly documented after the activity had ended: in 44% of those affected, a persistent positive change in mood was recorded “often” or “always” – in 36% this was “never” or “rarely”. (see Fig. 4).
Most of those affected also showed a noticeably high level of attention “often” or “always” (26% and 52%, respectively). Increased attention was “rarely” or “never” observed only for 21% of those affected (see Fig. 5).
The exploratory correlation analyzes showed only a few significant results due to the number of cases. The Chi² tests could not be interpreted adequately due to the occupancy of individual cells of <5. However, the following significant relationships emerged in the context of the correlation analyzes and mean comparisons.

Correlations:
The correlation analyzes of activities carried out and effects among participants show a moderately strong connection for three activities. With increased use of prayers and meditation, there is an increased positive mood effect on the participants during implementation with a moderately strong positive correlation (r=0.462; p=0.002). Furthermore, reduced attention was found in participants who were more likely to engage in creative work, i.e. a moderately strong negative correlation (r=-0.400; p=0.006). When “reading and reading aloud” increased, respondents were less likely to document increased attention during the activity (r=-0.504; p=0.005) and a smaller positive change in their mood after carrying out the activity (-0.298; p=0.047).

Mean comparisons
Only a few mean comparisons based on Mann-Whitney U tests showed significant results. The activity “baking and cooking” was documented more often when a spouse was present (p=0.015). In participants who had already actively lived their faith at the start of the study, the “prayer and meditation” activity was used more frequently (p=0.004) and positive effects were recorded more frequently, although only the increased attention during implementation reached significant values (p =0.023).
Excursus and experiences
When researching the living conditions of the very heterogeneous group of people with dementia and their requirements, classic comparative studies with comparison groups and before-and-after comparisons are important due to the many different forms of dementia, the high individuality of the manifestation of dementia and its mixed forms, and the predominantly progressive course not or only under special conditions such as those of Snowdon et al. to implement the “nun study” carried out. Therefore, as expected, the present study is based primarily on the individual observations of the reactions of people with dementia to the activities offered as part of the project and their classification in the overall context of the requirements, based on current knowledge, for quality of life-promoting and person-centered care, support and everyday organization Target group.
The clear goal of the demenz.begeistert team was to broaden the concept of spirituality and religiosity, both in terms of content and the target group, and to expand it beyond the Christian context in order to reach as many people and cultural groups as possible. The 60-page handout, which was created at the beginning of the project and distributed free of charge to potential multipliers, study participants and other interested parties, includes many concrete practical instructions and suggestions for the environment, everyday life and holidays of people with dementia in relation to all 5 major world religions and their annual cycles: Christianity, Judaism, Islam, Hinduism and Buddhism. Furthermore, the questionnaire was also offered to the participants in Turkish in order to keep the threshold for participation low for the largest group of people with a migration background in Germany.
Based on previous experience from other projects and the current literature on the subject of dementia, it was to be expected that there could be a particular difficulty in attracting people from other cultures and religious affiliations to the project.
Despite intensive efforts, this was not achieved, so the study is limited to observations from the Christian and previously non-religious context of people with dementia who are supported. However, due to their universal significance with regard to mood, attention and joy of life, these can also be transferred to people with other previous religious experience.
The observation forms submitted also reflect the project team's experiences in supporting the project, which also included regular on-site appointments and photographic documentation. The most common and repeated experiences in the study included:
• increased attention (“(TN) very concentrated during prayer”, “Sat for a relatively long time and listened attentively; restrained the urge to move”, “Sat on the chair for a long time by her standards”, “He was attentive and absorbed”, “Resident seems more awake and attentive during the activity", "She stayed with it the whole time, even though she otherwise has a great urge to move", "participation when listening attentively to the singing"),
• the returned memory of abilities that were partially lost or believed to be lost (“(TN) was able to sing along to songs and say prayers,” “Can sing along or say along to all the songs and prayers, even though she no longer speaks,” “Read an intercession during the service ", "(TN) clapped after the story and partly repeated it in his own words", "At the beginning she tried to do the sign of the cross", "She was suddenly able to remember old prayers and songs", "Speaks on her own (is otherwise rather reserved, answers briefly)"),
• an increase in the individual well-being of the participants (“Liked the music”, “She had a smile on her face at times. She seemed relaxed at the end.”), “Satisfaction during the activity”, “She started laughing while singing together. This "The usual 'complaints' largely fell silent," "He was very calm and relaxed," "She was happy and grateful to have been there for a prayer service in the place's room," "She is very satisfied, which she consciously shows. She tells about her memories of the past. Seems very proud and balanced")
• An articulation of anticipation that is not expected of people with advanced dementia (“She is already looking forward to the next time”, “Looking forward to the activity”, “She asks about the devotions and tells how good they are”).

Overall, the observations and feedback indicate that engaging with spirituality in dementia can have a positive effect on the mood and thus the well-being of people with dementia and therefore also of their relatives.
Discussion and limitations
The aim of the present exploratory study was to gain initial insights into the effect of spirituality or religiosity in the care of people with dementia, which can then be followed up with further studies. The results show positive effects that corresponding activities can have on those affected - especially with regard to positive changes in mood. The feedback from the nurses/supervisors (see excursus) also shows the positive perception of the activities.

Limitations/restrictions in the interpretation of the study results are as follows:
Due to the previously insufficient literature, a combined research approach was chosen. However, the study results are influenced by the corona pandemic, which made the already difficult task of recruiting participants even more difficult. The small number of cases (n=50) and the lack of a comparison group ensure that the correlation analyzes produced hardly any relevant results. The heterogeneity of the participants and the individual bio-
Graphics prevent causal interpretations in the evaluation of individual activities or the analysis of specific subgroups. The qualifications of the included participants varied (relatives or nursing professionals). It can be assumed that these different conditions can lead to different documented effects. It can also be assumed that the chosen activities were tailored to the condition and biographies of those affected and that for future generations the focus will be less on religiosity and more on spirituality and that the needs of those affected will change in the future. The present study can therefore only represent a snapshot of the currently older generation.
However, the results of the study show fundamentally positive effects and positive experiences of the test subjects involved (see excursus) and point to the need for further research in the area of care and support for people with dementia. Dementia will become even more important to society in the future and the goal should be to increase the quality of care and the satisfaction of those affected by ensuring person-centered care with the highest possible quality of life.
Conclusion and outlook
Religiosity or spirituality affects people of all ages. Every person will ask themselves the question of the meaning of life and the question of “What comes next?” in the course of their life. Dealing with spiritual questions gives people support and can be particularly supportive in the last phase of life - especially for people with dementia who are increasingly losing their orientation. In order to maintain the emotional connection and continue to give people clear structures, spiritual activities can have a supportive effect. Which activities and to what extent could and should be used for people with dementia essentially depends on the individual preferences of those affected, their biographies and the assessment and imagination of the people accompanying them. With targeted activities, relatives and professional carers could achieve improved states of mind and improved quality of life and satisfaction of those affected and gain easier access to those affected. However, further studies are necessary in this field of research in order to systematically record and sustainably improve the care of people with dementia in terms of religiosity and spirituality. <<