Better spiritual support for people living with early stage dementia: Developing the diamond conversation model

Abstract

Background

People with early-stage dementia could benefit greatly from on-going spiritual support. However, health care professionals working in dementia care often do not have a clear idea of what such support might entail. There is a lack of tools that can help professionals provide such support. The Diamond conversation model used in palliative care could provide such a support. Aims: To develop the Diamond model for early-stage dementia so that professionals can provide better spiritual support.

Methods

Participatory research was conducted. Reflective interviews with chaplains, case managers and health psychologists identified frequently occurring existential and spiritual issues of clients and family members. A core participatory group consisting of chaplains, a psychologist and a researcher further analysed these issues thematically and co-developed the Diamond model for early stage dementia over three co-creation sessions. Researchers with Diamond model expertise provided feedback to the core participatory group in between these sessions based on the session output.

Findings

Central existential and spiritual issues were found to be: self-confidence and –worth, adaptability and capacity, security and loss, burden and enrichment of memory and faith and meaning. The five polarities of the Diamond model were found helpful to understand tensions surrounding these issues. Specific tensions were identified between maintaining a self and being valued, finding direction in what to do and a way to bear changes in ability, a strong need for attachment and letting go of past ways to relate to one another, the renewed intensity of long term memories and decline of the short term ones and surrendering to one’s life situation and wanting certainty and meaning.

Conclusions

The newly developed Diamond model for people with early-stage dementia offers a valuable framework to help professionals provide conversational support. More research needs to be done to further test and develop the model in practice.

Background and objectives

The onset of dementia disrupts the lives of people and their family members (van Wijngaarden et al., 2019). This disruption causes intra- and inter-personal turmoil (Daly et al., 2019; Gomersall et al., 2015). Feelings of uncertainty, anxiety, fear, anger and loss concerning autonomy, meaning and security may become prevalent (Bryden, 2018; Steeman et al., 2006). A deep sense of disconnection to others and the world may take hold (Bryden, 2018; van Wijngaarden et al., 2019). Within this mix, spirituality often has an important role (Agli et al., 2015; Daly et al., 2019).

Repeatedly, spirituality has been shown to help people engage and cope with turmoil associated with dementia by fostering a sense of meaning, purpose, comfort, hope and guidance (Daly et al., 2019; Ennis & Kazer, 2013; Kaufman et al., 2007). Care for people with dementia and their family members can therefore benefit greatly from incorporating the spiritual dimension. Unfortunately, research shows that the spiritual needs of people with dementia and their family members have been neglected (Carr et al., 2011; Daly et al., 2019; Gijsberts et al., 2013; Tompkins & Sorrell, 2008). Causes of this neglect are a lack of clarity concerning the spiritual dimension and a lack of confidence in addressing spiritual needs, especially among non spiritual care specialists (Beagan & Kumas-Tan, 2005; Bursell & Mayers, 2010; Daly et al., 2019; Toivonen et al., 2018). Moreover, there is a pronounced shortage of spiritual models and tools that could support professionals in the spiritual dimension of dementia care (Palmer et al., 2020). Concerning early stage dementia, there is an even greater scarcity in this regard (Palmer et al., 2020; Steeman et al., 2006). This is unfortunate as it is in this stage that people are most aware of their turmoil, resulting struggles and strong need for meaning, connection and purpose (Beuscher & Beck, 2008; Palmer et al., 2020). It is in this stage too, that people and their family members can reflect on what is of greatest value, so that this can be honored in later stages, when self-reflection and -expression become progressively more challenging (Beuscher & Beck, 2008).

In palliative care the spiritual dimension of care is well researched (Balboni et al., 2017; Steinhauser et al., 2017). It has been argued that a palliative care approach might improve care for people with dementia and their family members in all phases of the disease (Van Der Steen et al., 2014). One model that was developed to facilitate meaningful reflection and expression of patients with al life threatening disease within palliative care settings is the Diamond spiritual conversation model (Leget, 2017). Both patients and professionals involved in palliative care, have validated the importance this model (de Vries et al., 2021; Haufe et al., 2022). It has been shown to offer a clear understanding of what the spiritual dimension of palliative care can entail and has enabled care professionals to better attend to patients’ spiritual needs (Haufe et al., 2022; Vermandere et al., 2013, 2015).

The Diamond model is shown in Figure 1. Underlying the model is an understanding of the spiritual dimension as defined by the European Association for Palliative Care: ‘Spirituality is the aspect of humanity that refers to the way individuals seek and express meaning and purpose and the way they experience their connectedness to the moment, to self, to others, to nature and to the significant or sacred’ (Nolan et al., 2011). This definition offers a broader than strictly religious understanding of spirituality and provides more room for a great variety of spiritual experiences. The model centers on the idea of fostering the inner space of patients, families, and health care professionals. Inner space is important to cope with the existential or spiritual dimension of suffering, but also to develop an open and attentive listening attitude. The Diamond model furthermore is composed of five anthropological polarities underlying the spiritual dimension of patient’s needs. These five polarities are helpful for interpreting the meaning and dynamism of existential and spiritual processes. The me – other polarity concerns the way in which a person relates to him or herself and the role that others play in that relation. For patients receiving palliative care, there can be a tension between asserting oneself and accommodating wishes of others. The doing – undergoing polarity is about the way someone relates to a possible course of action, whether it is active or receptive. In palliative care, this field of tension is often about decisions to be made in relieving disease or pain. The holding on – letting go polarity concerns the way in which a person deals with changes in precious relationships. In patients receiving palliative care, this tension often arises with regard to saying goodbye to family members. The remembering – forgetting polarity is about the way someone relates to past life experiences. In the palliative care context, this can give rise to tension between evaluating one’s life and the influence of regrets and needs to deal with unfinished business. The believing - knowing polarity concerns the way someone relates to things greater than oneself. For patients receiving palliative care, tension often arises in trying to relate to death and beyond. At any moment, a specific polarity may be foregrounded or a combination of polarities may be active, depending on the circumstances.

Figure 1.

The Diamond spiritual conversation model, adapted from the book ‘Art of living, Art of Dying’ by Carlo Leget, 2017.

With the help of the model, care professionals can explore these polarities together with patients and family members in order to become more aware of tensions, discover new interpretations and facilitate a sense of perspective and transformation. The central concept of inner space is both a facilitator and possible outcome of this process. Becoming aware of and giving voice to existing tensions allows for inner space to resonate with oneself, and (re-) interpreting and gaining perspective on tensions enhances inner space. In this way the model also states a clear goal for spiritual conversational support: to be more in touch with and enhance inner space.

In our participatory research with professionals we have sought to ascertain if and how this conversational model could be of value for spiritual support of people with early stage dementia and their family members. Our objective was to develop this framework to help professionals enhance the quality of spiritual care for this group of patients. We especially sought to do so for professionals who are not specialized in spiritual care (such as dementia case managers), though professionals who are specialists (such as chaplains) may benefit also. For the latter group, a framework of a broader range of spiritual issues specific to early stage dementia may also help to provide a useful and expansive overview.

Methods

Research paradigm and qualitative approach

The research paradigm of this study was based on participatory principles (Abma et al., 2019). Participatory research prioritizes co-construction of the research process through collaboration between researchers and non-researchers (Cargo & Mercer, 2008). It proactively engages end-users of the research results in a partnership that integrates theoretical and methodological expertise with practical knowledge and experience in an effort to improve the end-users practice (Bush et al., 2017; Vaughn & Jacquez, 2020).

We conducted our research in four stages. In stage one (October-December 2020) the gap in spiritual dementia care research and the Diamond model were presented by the first author to a nursing home and home care director in order to ascertain participatory interest. On the basis of this presentation a core group of two participants interested in the development of spiritual care and the principal researcher was formed. This core group co-constructed the research design of reflective interviews and co-creation sessions. In stage two (January-March 2021) eleven reflective interviews with dementia care professionals, including the two core participants, were conducted to identify important spiritual themes for people with early stage dementia with the help of the Diamond model. In stage three (April-August 2021), the core participatory group (with one interviewee as an added member) analyzed data from stage two and further developed the Diamond model in three co-creation sessions. In between sessions a research group of three palliative care researchers with Diamond model expertise provided feedback twice on the co-creation-session outputs in an iterative process. In the fourth and final stage (September 2021), the resulting Diamond model for early stage dementia was member checked with the interviewees. Throughout the research process the first author alternated between the role of initiator, researcher, co-participant and coordinator.

Research context

Our research was conducted within the nursing home and care at home context. These contexts were chosen because of the available pool of dementia care professionals who regularly provide care with an (implicit) existential or spiritual dimension. Together with these professionals we co-constructed a design that was academically robust, but also adhered to practical considerations of availability and time constraints. Due to restrictions of personal contact following the onset of the corona virus, most research activities were conducted in an online Microsoft Teams environment. Use of the camera function allowed for an adequate reading of non-verbal cues in the one-on-one interviews and group sessions. Because the core group was relatively small (four persons), each participant in the group sessions had ample opportunity to participate.

Sampling strategy

A combination of purposeful and convenience sampling was used. Together with the first two (core group) participants it was determined that dementia care experts who have regular in-depth conversations with people with early stage dementia such as chaplains, psychologists and case managers should be included in the research. Experts were defined as having more than ten years of experience with early stage dementia care. These participants were found in the broader network of the first two participants (who themselves were experts). We strove to have an even distribution among the three mentioned professional groups and diversity in spiritual backgrounds of participants. Sampling was halted after 11 participants, due to diminishing returns of the interviews. This is in line with sampling literature that has shown that 11–12 interviews are enough to become aware of circa 95% of relevant themes (Guest et al., 2020).

Ethical review

The study was submitted to the medical ethics review board of the University Medical Center of Utrecht. The review board stated that because participants were not patients subjected to treatment or required to follow a certain behavioral strategy as referred to in the Dutch Medical Research Involving Human Subject Act did not apply (WMO, art.1b), no approval of this study was needed (WAG/mb/18/038341).

Participants gave consent by replying to an email explaining the goals of the research, its participatory and confidentiality principles and data handling procedure. This paper has been written in line with the Dementia Engagement and Empowerment Project -guide on language about dementia (DEEP, 2014).

Data collection and processing

Data collection and analysis started on October 27, 2020 and ended on September 22, 2021. Types of data collected included interview and co-creation session recordings and transcripts and notes by the principle researcher. For the reflective interviews, a loose guideline was used wherein participants were first asked about frequently occurring existential and spiritual issues of people with early stage dementia. In the second half of the interview the Diamond model was introduced and explained. Once the participant was familiar with the model, frequently occurring issues were analyzed and categorized using this framework.

Verbatim transcripts were made on the basis of Microsoft Teams recordings by an agency using a secured connection. Research data were stored on a secured network at the University of Humanistic studies under the provision of anonymity. Triangulation was achieved through the collection of data from different types of dementia care professionals, from researchers and non-researchers and through the use of multiple methods.

Data analysis

Data from stage two were analyzed using the diamond model by participants themselves and by two researchers. Interviewees were asked to code the frequently occurring issues according to where they thought they belonged in the Diamond model. On the basis of the transcripts the principle researcher coded the explored issues as well in terms of Diamond model polarities. A second researcher also coded the first two and the last two interviews in terms of polarities. This was done to enhance the trustworthiness of the coding process and allow for triangulation. In stage three, the grouped codes and fragments concerning the five polarities and the central concept of inner space were presented to the core participatory group. Over three sessions this group analyzed the fragments in terms of higher order themes using thematic analysis (Braun & Clarke, 2006). The resulting themes were presented to the research group twice, who then provided feedback on the conceptual clarity of the themes. Based on those themes and understanding, the participatory and research group determined the specific dynamic per Diamond model polarity. The resulting content of the early stage dementia Diamond was member checked in stage four with the interviewees to enhance the trustworthiness of the final model.

Participants

Table 1 shows the characteristics of the participating dementia care professionals. In total 4 chaplains, 3 psychologists and 4 case managers participated, with 2 chaplains and 1 psychologist belonging to the core participatory group. Most participants (9) were female. The mean years of experience with people with early stage dementia was 22 years. Regarding spiritual background, most participants were of a Christian denomination, although half of those did not actively engage with that background.

Table 1.

Characteristics of participating dementia care professionals.

Profession	Age	Gender	Years experience with client group	Religious/spiritual background	Level of participation
Chaplain 1	54	Male	32	Christian, non-practicing	Reflective interview, core group
Chaplain 2	46	Female	16	Humanistic, practicing	Reflective interview
Chaplain 3	59	Female	12	Lutheran, practicing	Reflective interview, core group
Chaplain 4	52	Male	18	Christian, non-practicing	Reflective interview
Psychologist 1	53	Female	28	Spiritual but non-religious	Reflective interview, core group
Psychologist 2	52	Female	28	Not spiritual	Reflective interview
Psychologist 3	54	Female	30	Protestant, practicing	Reflective interview
Case manager 1	59	Female	27	Catholic, practicing	Reflective interview
Case manager 2	36	Female	11	Baptist, non-practicing	Reflective interview
Case manager 3	52	Female	25	Protestant, practicing	Reflective interview
Case manager 4	63	Female	13	Protestant, non practicing	Reflective interview

Findings

Figure 2 shows the Diamond model for people with early stage dementia, the end result of our research, in the form of a schematic mapping of key terms. It conceptualizes the most important issues, polarities and inner space relations analyzed in stage 3. Stage 4 member checking resulted in small changes in the wording to more accurately depict themes and dynamics. Below we present the integrated findings for the concept of inner space and the 5 polarities.

Figure 2.

The Diamond model for people with early stage dementia.

Inner space

Central to the model is the concept of inner space. As mentioned in the introduction, inner space has been seen in the palliative care setting as space to resonate with issues within oneself, as well as, enhanced space that accompanies new interpretations of issues that help one gain perspective. For the core participatory group, as well as the research group, inner space for people with early stage dementia was also held to be the experience of freedom to relate to the issues and polarities mentioned below. This is encapsulated by the following quote by a psychologist within the core participant group:

“The essence of inner space is feeling free to move from field to field [of the model]. If this freedom is restricted, the experience of inner space is restricted as well… Sometimes they are aware of it and sometimes unaware… But it is about exploring and trying to see if a path to a new found freedom is possible, so that people can become aware of their issues, work through them or restate them, so that they can choose more freely how they want to relate to those fields and poles within them …”

Psychologist 1

Inner space, the goal of spiritual support conversations, was therefore conceptualized as not only allowing for enhanced awareness and the ability to review issues, but also as a (renewed) sense of inner freedom, so that a new choice or (re-) positioning is possible.

The polarities

Me–the other

The first polarity is about the way in which people can relate to themselves and the influence others may have on this relationship. For people with early stage dementia the central issues in this field were found to be those of self-confidence and self-worth.

“A very important theme that we encounter very often is the struggle to maintain a sense of self-confidence and personal value. That shines through everywhere. It has to do with the very negative connotation that is attached to dementia in society at large, that causes the experience of the diagnosis to be infused with shame… There is sometimes a tendency to want to hide the diagnosis from others. You don’t want to be a pathetic figure, but how do you keep your sense of value?”

Psychologist 2

These issues often come about through the experience of (fear of) losing oneself. This fear is often based on people’s perception of their future predicament due to the consequences of the disease.

“For instance, I talked to a lady recently who told me: “but I am going to lose myself with this, that is really awful. But how and when? And how do I deal with that?”. She was very upset about it.”

Case manager

These issues can also come to the fore following the fluctuation and decline of mental functioning.

“You can notice that people kind of lose themselves… you know when they start getting holes in their memory and they can’t understand what’s happening to them, they can experience moments that they really lose contact with who they are”

Chaplain 2

The fear of losing oneself and losing contact with oneself through loss of functioning can become a recurring pattern, following other confrontations with decline. The person with dementia can then become occupied with challenges, which are related to the two poles of the tension field. Towards the me pole, an intra-personal challenge of maintaining a sense of self was seen to appear:

“It raises questions: “Who am I really? What is fundamental to me, what am I made of?”... they want some solid ground, something to maintain”

Chaplain 3

Towards the other pole, an inter-personal challenge of being valued is reported:

“They can experience that others are talking about them, not with them… It’s very important for people with dementia to be valued, to matter. They often tell me this… that they want to be seen and recognized you know?”

Case manager 1

An inner tension between the poles can arise when one’s sense of self and what one is valued for become different things. Inner space regarding this field was seen as the degree to which a person with early stage dementia experiences freedom to ensure a coherent sense of identity.

Doing–undergoing

The second polarity is about how someone responds to changes in their functioning, either by taking action or bearing what happens to them. For people with early stage dementia and their family members, the central issues of this field were analyzed to be ones of adaptability and capability. Within the tension of this polarity the experience of diminishing capabilities can give rise to questions of how to adapt.

“They are confronted with all sorts of questions: “How do I deal with participation in my clubs or societies?” “How can I keep doing my grocery shopping even though I keep forgetting things?”” Can I still do my own bookkeeping?””

Case manager 2

These questions were related to the unique challenge that people with dementia have, even in the early stage, concerning adaptation.

“With a physical disability you still have all your mental faculties so that you can analyze the situation and adapt accordingly. But with dementia it’s often more complicated because of the deterioration of the areas of the brain that you need to make such an adaptation.”

Psychologist 2

For the doing-pole, people with early stage dementia can therefore be occupied by a challenge to find the right direction in what to do. This challenge holds true not only for people with dementia, but for their family members as well.

“[that is why] we talk about things that you do together, things that you do alone. Is that still possible? How much help is needed?”

Psychologist 1

For the undergoing-pole, a challenge of how to become more mindful of a balanced way to be might arise. This can take the form of making people aware of how to be more attuned to their current capabilities.

“It is important to help them get in touch with what is constant, especially if your mind starts abandoning you, for instance by redirecting attention to activities that are more anchored in the body such as cycling or taking walks… helping them to experience how the body can give more of a firm foundation.”

Psychologist 1

This is also something that a family member may need to be made aware of.

“I talk to partners about this as well: “I mean, the illness is a given, but be mindful of the possibilities that someone still has, but also, don’t ask to much of someone because some things are just not possible in that way anymore.””

Case manager 1

Tension between these poles was seen to arise when patient and family member were each occupied with different poles. Inner space for this field was expressed as the degree to which one experiences freedom to restructure daily life together.

Holding on–letting go

The third polarity concerns the way in which a person deals with changes in precious relations. For this field the central issues were seen to be loss and security. Dealing with (anticipated) loss was analyzed as being an important issue for both the person with dementia and their family members.

“ Both have to deal with the fact that things are taken from them, that things happen to them… and being forced to let go can feel very unfair.”

Chaplain 3

“…and of course, because dementia is a progressive disease, this process keeps coming back. You come to accept that something has fallen away and then something else falls away. It can be a very difficult thing”

Case manager 2

For the person with dementia, loss can bring forth a strong need for security, often in the form of a need for attachment with a partner. This corresponds to the holding on pole.

“In my experience, especially in this phase, it very often is about what a person with dementia can hold on to, about what can give me a sense of security and often that also translates into the question: “Who can I trust?””

Chaplain 3

“The attachment bond is very important in this regard, that feeling of intimacy, and being accepted within that bond.”

Psychologist 1

This in turn can set up challenges of detachment as partners struggle with how to let go of how things were.

“In my experience it’s about reciprocity in the relationship and finding new ways to support that... that a person with dementia can find new ways of showing affection for instance, or, the other way around, that the partner can let go of the image of how the loved one should be…”

Psychologist 1

Tension between the polarities was also seen when partners were not aligned concerning holding on and letting go of old forms and norms, to make way for something new. Inner space for both was expressed as being the degree to which one experiences freedom to reconcile with this new normality, especially as it relates to important relationships.

Remembering–forgetting

The fourth polarity is about the way a person relates to past life experiences. For people with early stage dementia, especially Alzheimer’s, the main issues in this polarity were enrichment and burden, as it relates to the function of memory. A shift in recall was analyzed as being a very important theme for a lot of people with early stage Alzheimer’s disease. Multiple interviewees spoke of the double process of the discontinuation of short-term memory and the continuation of long-term memories.

“Memory becomes an important theme because less of the now is added to it because of the disease… and because memories of old times are sturdier, they become more of a focal point.”

Psychologist 2

Especially for people with (early) Alzheimer’s disease, challenges corresponding to the poles can come to the fore. For the remembering pole, a shift to long term memories can confront people with a continuity re-emergence of past traumatic experiences.

“I see that with some regularity, that people have buried those memories deep down… but then they start reliving it.”

Case manager 1

The shift in recall was, however, also analyzed to be a source of enrichment.

“It can also work out very well if someone can fondly reminisce about their great childhood or work-related achievements that they are very proud of.”

Psychologist 3

For the forgetting pole, the discontinuity of short-term recall can concern people as an important challenge.

“I often have conversations with people in which they express sadness of losing their ability to remember and fear about forgetting more.”

Chaplain 2

A tension was commonly seen to exist between being able to work through old burdensome memories and an inability to remember progress made in this regard.

“It is lamentable that people have trouble remembering new things and that can also make dealing with the past a lot harder.”

Psychologist 1

Inner space in this field was therefore expressed as the degree to which one experiences freedom to relate to this fundamental shift in recall.

Believing and knowing

The fifth polarity concerns the way people relate to things greater than themselves, a force or the unknown. Within this field of tension issues of faith and meaning were analyzed to be central for people with early stage dementia. These issues often followed the shock of the diagnosis but could return as the disease progresses.

“Following the diagnosis of dementia, people’s minds often go to the final phase of the disease and the specter of being in that state, in the nursing home… and this image can haunt them again after each setback…”

Psychologist 1

This type of imagery, together with the uncertain nature of how the disease will progress, was reported to give rise to fundamental questions of a faith based and/or more philosophical nature.

“…you really need to deal with questions like: “Did I commit some sin in my life that I deserve this fate? What does God have in store for me?””

Case manager 2

““Why does this have to happen?… “How will I get to the end phase, will I still be there?”… ”

Psychologist 1

With regard to the believing pole, people may become engrossed by the challenge of surrender to one’s situation, where religious or philosophy of life beliefs can be helpful.

“Faith can be a resource that people can mobilize to experience quality of life… I hear that often from people, that religious faith can help them surrender to what is happening to them.”

Psychologist 2

“A philosophy of life can really support people: “It is a foundation that I can lean on and that I don’t need to create””

Chaplain 1

With regard to the knowing pole, people may become occupied by finding out what dementia means to them personally.

“People often associate the term with an image of someone who is totally confused and like a helpless child. It takes time to process that image and relate it to them… Often they ask questions about what they can expect, based on what is known about the disease.”

Case manager 3

Through such a quest, people seemed to search for a sense of certainty in a very uncertain situation. Some people found this certainty through a stipulated agreement concerning the end of life.

“You see this more often with highly educated people who have a strong need for control... for them, stipulating an agreement that they will be assisted to end their own life when they feel the time has come, gives a sense of certainty”

Psychologist 3

Tension between poles was seen to arise between the inherent uncertainty concerning how exactly the disease will progress and a need to resign oneself to one’s fate. Inner space in this field was conceptualized as the degree to which one experiences freedom to find ones fundamental bearings in the tumult of this life situation.

Discussion and conclusions

Main findings

Impact of dementia

For people with early stage dementia and their family members, dementia can be seen to impact existential and spiritual processes in numerous ways. The starting point for these processes can very often be found in perceived mental decline, now or in the future. This confrontation with decline is often a reoccurring phenomenon as the disease progresses. Perceiving decline and coming to grips with it, brings existential and spiritual issues to the forefront, forcing persons with dementia and their family members to relate to them.

Issues, polarities and tensions

Within the framework of the Diamond model, five important sets of issues are: self-confidence and –worth, adaptability and capacity, security and loss, burden and enrichment of memory and, faith and meaning. These sets of issues can be seen to exist in a field of tension between two polarities, respectively between maintaining a sense of self and being valued as oneself, between finding direction for doing and being able to bear changes in ability, between holding on to an attachment figure and letting go of the way things were in that relationship, between the intense continuity of the more distant past and the discontinuities of the recent past and, between surrendering to one’s uncertain life situation and wanting certainty. At each moment, one or more polarities may be relevant.

Inner space

In becoming aware of these polarities and exploring the dynamics of tension within and between the poles, a sense of inner space, as a space of reflection, is called upon. Through the process of becoming aware, gaining perspective on what the turmoil is about and how it restricts, new ways of relating to the issues can also be explored. The measure of success of that exploration is the degree to which a person and family member feel free to relate to the poles in order to reinsure identity, restructure daily life, reconcile with the new normal, reorient in time and recalibrate ones bearings.

Relation to previous research

Substantiation of aspects of the above comes from literature on the experience of living with early stage dementia. With regard to the polarity of maintaining self and being valued, a literature review of qualitative studies by Steeman et al. (2006) found that people often reported a struggle to hold onto their identity, and that being understood and valued by others was important in this regard. Likewise, a literature review of spiritual needs of older adults living with dementia by Britt et al. (2023) found that preserving self was an important challenge for people. What our research adds is a more pronounced polarity between intra- and inter-personal processes that are instrumental in reaffirming identity. Hereby the issue of being able to trust who you are has been added to the issue of self-worth.

With regard to the polarity of direction for doing and bearing changes, Steeman et al. (2006) found that participating in enjoyable and meaningful activities was very important for people. A systematic review of spirituality with people living with dementia by Daly et al. (2019) also found that providing structure and purpose to everyday activities was an important challenge. What our research makes more explicit in this regard are the issues of adaptability and capability that people and family members may struggle with, specifically within the effort to restructure daily life.

Concerning the polarity of attachment and detachment, the mentioned review by Daly et al. brings to light the importance of a sense of familiarity and safety that goes with an ongoing connection to important others. These connections are seen as a two way process, whereby persons with dementia and family members can be in or out of sync with each other. This is echoed in the review by Beuscher and Beck (2008), whereby imbalance is seen to be a state of disconnection between person and family member. What our research makes more explicit is that retaining or regaining connection is also a function of disengaging with aspects of how things were, so that one can find space to reconcile with the new normal.

Concerning the polarity of continuity and discontinuity, not much attention is paid to the spiritual dimension of the decline of and struggle with memory in the literature. Steeman et al. (2006) did find in their review that shifts in, and difficulty with, recall present important challenges. They do not, however, elaborate on how these challenges relate to existential and spiritual processes. What our research adds to this understanding is that a shift in recall can carry with it issues of burden and enrichment that people may feel compelled to relate to. The importance of enrichment has been established within the literature concerning the facilitation of reminiscence (see for instance Park et al., 2019).

With respect to the polarity of surrender and certainty, the review of Beuscher and Beck (2008) and research by Balqis et al. (2021) describe the importance of faith and a relation with God in surrendering to the life situation. What our research adds is that patients may struggle to find what dementia means to them personally and what they can be certain of moving forward.

Strengths and limitations

Our research has a number of strengths. First, it has produced a framework that integrates important existential and spiritual issues and tensions for people with early stage dementia and their family members. In this way, the model can help professionals become aware of what a person and family member are grappling with in this dimension. Second, because the dynamics of these tensions are often not clear to people and family members, the framework can also be used to help people explore the nature of tensions and investigate what is causing them. Third, the developed model also sets a specific goal for conversational support: getting in touch with an expanding a sense of inner space. This can be accomplished by gaining perspective on the dynamics of tensions and by exploring new ways to interpret ones circumstances, so that one feels less restricted and can see ways forward. Fourth, because the model has been developed with the participation of experienced dementia care professionals, it is also very much grounded in practice.

There are also limitations to our research. First, we have not directly asked people with dementia and their family members about the found issues and associated processes. It is possible that direct consultation of persons with dementia and their family members could have produced different or additional insights. Based on the literature mentioned above, we do feel that the importance of the issues and processes found are likely, but further research with persons and their family members is needed to validate the framework. Second, more attention needs to be paid to the generalizability of these results across different forms of dementia. With the exception of the polarity concerning continuity and discontinuity of memory, which was explicitly seen as pertaining most to Alzheimer’s disease, all other polarities were seen to be important for all forms. The model would, however, benefit from more verification of this finding. Third, most participants in our research have a Christian background. More research with professionals knowledgeable of other religious and spiritual traditions is required to enhance the generalizability of the findings across religious and/or cultural backgrounds.

Fourth and finally, a practical layer still needs to be added to the framework; that of conversational guidance forms and concrete questions that can aid the conversational support. Such insights would offer more specific conversation handles for professionals.

Conclusions

Our findings, as synthesized in the model, offer dementia care professionals a first set of guiding tools and principles to enhance existential and spiritual support through conversations. We have not found any other model in the spiritual support literature for persons with early stage dementia and their family members that offers this. In our follow-up research we will first do a pilot to further develop and test questions and conversational approaches that may help to explore the Diamond model polarities. Herein we will involve persons with dementia and their family members.

Biography

Marc Haufe is a social psychologist researching existential and spiritual domains. He has a background in scientific and market research in healthcare. He is currently working on his PHD at the University for Humanistic Studies in Utrecht, the Netherlands. His dissertation is about existential and spiritual care for people with early stage dementia and their loved ones.

Carlo Leget is Professor in Care Ethics and Endowed Professor of Spiritual and Ethical Questions in Palliative Care at the University for Humanistic Studies in Utrecht, the Netherlands. He is the author of: Art of Living, Art of Dying: Spiritual Care for a Good Death and is the originator of the Diamond existential and spiritual conversation model for palliative care.

Marieke Potma is a philosopher and care ethicist researching spiritual and religious domains. She is currently working on her PHD at the University for Humanistic Studies in Utrecht, the Netherlands. Her dissertation is about the intercultural dimensions of spiritual palliative care.

Saskia Teunissen, is professor in palliative care and hospice care at the Julius Center for Healthcare Sciences and Primary Care, University Medical Center Utrecht in Utrecht, the Netherlands. She is responsible for the UMC Utrecht Center of Expertise of Palliative Care and is director of the Dutch Cooperation Palliative Care (cooperatie Palliatieve Zorg Nederland/PZNL).

Ethical statement

Ethical approval

The study was evaluated by the ethics review board of the University Medical Center of Utrecht. They confirmed that the Dutch Medical Research Involving Human Subject Act (WMO) did not apply, because participants were not patients subjected to treatment or required to follow a certain behavioral strategy as referred to in the WMO (art.1b). Therefore, they waived approval of this study (WAG/mb/18/038341). Participants gave consent by replying to an email explaining the goals of the research, its participatory and confidentiality principles and data handling procedure. This paper has been written in line with the Dementia Engagement and Empowerment Project -guide on language about dementia (DEEP, 2014).

ORCID iD

Marc Haufe https://orcid.org/0000-0002-4944-9592