Tuning into the existential or spiritual.

Not all aspects of the conversations that professionals had with people with mild to moderate dementia and their loved ones were seen as existentially or spiritually relevant. There were conversational cues that could activate a more existential or spiritual approach. Or as one case manager put it:

“It is because of such signals that I feel the necessity to go underneath the surface of things…” (Case manager 2, interview 2)

Such signals, mostly apparent trough facial expression and body language, could take on a variety of forms but can roughly be classified as signals of tension due to experienced difficulties and challenges, and signals of strength and a need for growth, as the two quotes below illustrate.

“For me a signal is definitely that I see someone struggling and I may ask: ‘I am picking up signals that this is very difficult for you, is that correct?’” (Psychologist, interview 1)

“Sometimes I can notice: ‘ok this lady needs much more space, she needs space from me to grow within the context of our conversations…’” (Case manager 3, interview 2)

Turning into a co-researcher.

Many respondents reported that following up on such signals required an inner movement or repositioning on their part to open up a space for the existential or spiritual dimension in the conversation. This was required because much conversation tended to follow a certain protocol that is not conducive to an open exploration of the deeper concerns of clients and loved ones:

“We have standard questionnaires that we often use in conversations, but sometimes you notice that you really need to disregard those questions and just open up to what people want to say” (Case manager 3, interview 1)

“You need to create space for that and that is a decision point for me, a decision to make space in myself to be able to receive” (Case manager 5, interview 1)

This inner movement was also described metaphorically as turning from standing opposite someone to standing next to someone in the conversation:

“You have to go and stand next to someone, in that moment you are not there to teach or advise, but to be a kind of co-researcher…” (Psychologist, interview 2)

Standing next to each other as co-researcher was reported to open up a shared view to (part of) someone’s life experience.

Exploring experiences: The Diamond model polarities.

Once in this mode of co-researching, the existential or spiritual issues could better be explored. A dominant way to start doing this concerned asking for concrete experiences as examples of how the issues manifest themselves in peoples lives.

“I always ask for examples… that way you really can spotlight a moment… it’s like watching a little movie together” (Psychologist, interview 2)

Such prompting was found to often stimulate an unfolding story to listen to or research together in terms of existential or spiritual tensions or strengths. These stories could be listened to and further explored with the help of the Diamond model. In this way issues, themes and storylines could be related to the Diamond polarities, prompting specific conversational approaches. These results will be taken up in the next section.

Pregnant silences and key transformative questions.

After a thorough exploration together of existential or spiritual tension or strength, there was said to often be a moment of pregnant silence. This was found to be an especially important moment following the exploration of tensions.

“When the tension is fully named, then they can be silent” (Case manager 4, interview 2)

“There often follows a moment of silence, where people are processing what has been said. It is important to give that time, that there is space for that.” (Psychologist, interview 2)

Following such silent contemplation it was found that certain key questions can be asked to facilitate a calling forth of a core perspective on the matters at hand.

“…and from there you can proceed with: ‘what is most important?’” (Psychologist, interview 2)

“What does it mean?” (Case manager 1, interview 2)

“What is needed?” (Case manager 4, interview 2)

Room for possible alternatives and strengths.

Answering these questions was found to alleviate the tension from conflicting thoughts and feelings and freedom and space to move forward.

“Its like the tension subsides making room for the exploration of possible alternatives.” (Psychologist, interview 2)

In this sense, even though professionals explored both tensions and strengths together with people, the experienced tensions were often leading in the conversations. It was found that trying to explore strengths or new avenues of potential could often not be done without getting to the core meanings or needs of tensions first. Often, professionals would therefore explore the tensions first and then seek to transition to the exploration of strengths. This could be done in one conversation, but also across a number of conversations. As mentioned above, both types of exploration could be aided by the use of the Diamond model polarities, to which we now turn.

The Diamond model polarities: Exploring experiences.

Below we present what we found to be successful exploratory approaches for each of the five polarities within the Diamond model. In the phase two and three interview, professionals reflected on conversational strategies that they wanted to use, or had used, in order to become more aware of the value of those approaches. Such reflection provided not only new insight into the many benefits of the enhancement of inner space but also new approaches and transition questions to uncover existential or spiritual tensions or strengths.

Me–Other: Exploring the felt self.

This polarity deals with issues of self-confidence and worth, as they relate to the experience of maintaining a sense of self or being valued by others. It was found in our research that felt changes in intensity of emotions and fulfillment of important roles often led to felt tensions and a need for support. This type of support was given most in two peer group discussions with people with early onset dementia, which specifically dealt with issues of staying connected to a sense of self. A key opening question in these groups was:

“Do you feel yourself?” (Psychologist, interview 1)

Tensions regarding the felt self.

Answers to this question were frequently negative, with people commenting on feeling some sort of tension regarding loss of self. Listening to the unfolding stories with the help of the polarity helped to hear tensions regarding maintaining a sense of self with an intrapersonal aspect or an interpersonal aspect. Intrapersonal tension often dealt with feeling out of place within oneself due to the effects of the disease. This tension could be further explored by asking questions about the accompanying thoughts, mood/ emotions and the body with questions such as:

“What kind of effect does it have on your mood?” (Psychologist, interview 1)

“What are dominant emotions that come up?” (Case manager 4, interview 2)

“What kind of effects does it have on your bodily experience? For instance does it affect your breathing or energy level?” (Psychologist, interview 2)

Interpersonal tension often dealt with important roles for people, such as father, provider or wife and the ways in which people felt they could not fulfill such role anymore. This tension could be further explored by asking about important relationships and the way other people react differently to the person with dementia.

“How do you relate to others that are important to you?” (Psychologist, interview 1)

“What are noticeable changes?” (Psychologist, interview 2)

“How do they react?” (Case manager 1, interview 1)

Key transformative questions.

After exploring these identity related tensions helpful key questions were found to be:

“What do you need to feel yourself?” (Psychologist, interview 1)

“What do you need from others to feel yourself?” (Psychologist, interview 2)

Answering these questions could give the client a new perspective and free up some inner space. This, in turn, could also allow for a transition to exploration of possible strengths.

Strengths regarding the felt self.

Asking questions about types of situations, activities and people that made people feel strong helped identify aspects of the felt self that needed to be heeded or nurtured.

“Because sometimes people can sort of forget about those instances, and it can be very valuable to get in touch with that or relive that so it can guide them.” (Psychologist, interview 2)

For being valued, special attention was paid to the exploration of all the ways important roles are fulfilled. This was successfully prompted by the questions:

“What are various ways you fulfill your role as [father, wife etc.]?” (Psychologist, interview 1)

“How are you of value in that role?” (Psychologist, interview 1)

“How can you be of value in that role?” (Psychologist, interview 2)

An extra boost for experiencing both types of strengths was found to be explorations of character traits, qualities or talents that were regarded as positive by self or others.

“…then you really see them grow!” (Psychologist, interview 2)

Doing–Undergoing: Exploring daily routines.

This polarity concerns issues of adaptability and capacity as they relate to a sense of direction in what to do and a way to be in daily life. Dementia was often found to cause a variety of challenges, such as overstimulation or loss of initiative, which made going about ones day-to-day business difficult. This polarity came up in both the group discussions held by the psychologist and the support conversations conducted by the case-managers. An important question to open up exploration was:

“How are you managing your daily life?” (Psychologist, interview 2)

Tensions regarding daily routines.

For both people with dementia and their loved ones managing the daily routine could cause tensions. Regarding a sense of direction, tensions were often experienced between the person with dementia and others. Others where experienced as interfering with the way the client wanted to conduct his daily life. Loved ones for instance, could direct the person with dementia to keep doing things, such as certain social activities, that the person did not want to do anymore. Case-managers too, could be perceived as someone who was there to tell the person what he could or could not do. Clients could offer a lot of resistance to this perceived interference, especially if they did not recognize or agree with the diagnosis.

“In those circumstances you can’t really offer advice, because the person will not want to take it.” (Case manager 3, interview 2)

A path forward was a further exploration of this tension with the help of questions like:

“How are people [am I] interfering?” (Case manager 2, interview 1)

“How does that impact you?” (Psychologist, interview 1)

Regarding the pole of a way to be, people with dementia could also feel tension in not being able to carry out certain activities, such as driving a car or doing the grocery shopping. Losing the ability to plan and organize or maintain an overview, were often seen as an impediment on daily activities. Questions used for further exploring this type of tension were:

“What are the specific challenges that [the activity] represent?” (Case manager 3, interview 1))

“How does that differ from before?” (Case manager 3, interview 1)

Key transformative questions.

Concerning these challenges of daily life, helpful key contemplative questions, also with regard to a transitioning to strengths, were found to be:

“What is most important for you going forward?” (Case manager 3, interview 2) “What does [this activity or pastime] mean to you?” (Psychologist, interview 2)

Strengths regarding daily routines.

Regarding strengths, two types of explorations were found to be helpful. Concerning direction, the case-managers especially, explored areas where people with dementia had or could have a sense of choice and control. Regarding their own role as a possible interfering agent, an open question giving maximum control to the person with dementia was:

“What would you like to talk about?” (Case manager 3, interview 2)

Exploration of wishes for the future was also found to offer a sense of direction based on what was most important to people, with questions such as:

“How do you see the future? What do you want to keep doing for as long as possible? (Case manager 4, interview 1)

“What would be ideal living conditions if staying in the current home would not be possible any longer?” (Case manager 3, interview 2)

Concerning strengthening a way to be, exploration of valuable or pleasurable activities or pastimes was found to be supportive, particularly in the discussion groups. Valuable questions were:

“What [pastimes or] activities do really enjoy?” (Psychologist, interview 2)

“Which elements of this pastime or activity are particularly pleasurable or relaxing?” (Psychologist, interview 2)

A special focus in this exploration was also a search for analogous activities or pastimes that had the same type of meaning or experiential elements as those that were not possible any longer.

Holding on–Letting go: Exploring a trinity of needs.

This polarity concerns issues of security and loss as they relate to attachment to what is familiar and detachment from aspects of that familiarity. The relationship between the person with dementia and important attachment figures, mostly the partner, was often found to play a central role. Partners were found to be compatible or incompatible in their attempts to come to grips with the constantly changing situation. For instance, a person with dementia could let go of the more certain aspects of his former life, whilst the loved one might be holding on tightly to the ways things were. Challenges of attachment and detachment frequently came up in supportive conversations of the case managers, often conducted with both the person with dementia and their partners, but also came up in discussions conducted by the psychologist. A good opening question was found to be:

“How are you both coping with experienced changes?” (Case manager 3, interview 1)

For the professionals, exploration of this polarity often had three sides: the person with dementia, the loved one and the relationship itself.

Tensions regarding a trinity of needs.

Responses to this question could reveal difference between the person and their loved one either verbally or non-verbally.

“There were instances when the client said one thing and the partner signaled that they had a very different view.” (Case manager 5, interview 1)

For exploring this tension further, case-managers often conducted a double line of inquiry. For the attachment pole, where person and loved one had a strong sense of commitment to one another, such separate lines of inquiry were often conducted in the same conversation, whereby the experienced differences could be mirrored. Important differences were found in the way dementia related changes were viewed, the types of concerns regarding these changes and the type of expectations partners had about each other. Questions conducive to this mirroring process were:

“Do you experience that as well? How does it differ?” (Case manager 3, interview 1)

“How do you experience hearing this from [the other]?” (Case manager 3, interview 1)

For the detachment pole, where person and loved one could not really relate to each other, this type of exploration was not found to be conducive. Here, conversations apart from each other were more beneficial in exploring experienced tension with questions like:

“Do you feel understood by your partner?” (Case manager 1, interview 1)

“What does what no longer is possible together mean to you?” (Psychologist, interview 1)

“Do you have trouble moving on?” (Case manager 3, interview 2)

Key transformative questions.

For gaining a core perspective and a (relative) sense of release from tension within this polarity, key questions were said to be:

“What do you need from each other/ the other?” (Case manager 1, interview 1)

“What do you need for yourself?” (Case manager 3, interview 1)

Strengths regarding a trinity of needs.

To get in touch with (potential) strengths, differing ways of exploration were helpful. Regarding attachment, an exploration of reciprocity, mutuality and shared enjoyments could help people get in touch with the strengths of their relationship. Facilitating here were questions like:

“How are you complementary to each other?” (Case manager 3, interview 1

“What do you both enjoy?” (Psychologist, interview 1)

With respect to detachment, conversational support regularly transitioned to individual felt self or daily life explorations in order to strengthen the person with dementia or the loved one in his or her own life.

“Sometimes people just need a time-out for their own story and needs” (Case manager 3, interview 2)

Often, case managers would then also make an offer of additional conversational support in the form of peer discussion groups. These types of time outs from the ongoing pressures could then offer a chance to deal with a sense of loss and reposition one self in the relationship.

Remembering–Forgetting: exploring memory.

With respect to this polarity, issues of burden or enrichment of memory come up as people relate to a continuity of the more distant or a discontinuity of the recent past. With Alzheimer’s disease, but also with other forms of dementia, changes in the functioning of memory were repeatedly found to cause challenges for the person and or the loved one. This could concern intense onset of early memories or forgetfulness. Both case managers and the psychologist often dealt with this polarity. A good starting question was found to be:

“How are you experiencing memories or remembering?” (Case manager 3, interview 1)

Tensions regarding memory.

Tension filled stories and examples often dealt with challenges concerning the resurgence of distant memories or forgetfulness, the latter especially for people with Alzheimer’s. Continuity of distant memories could be especially troublesome if they dealt with unresolved conflict or trauma. A fuller exploration of such memories was done by traveling back in time with the person with the help of questions concerning emotion and relationships:

“What are dominant emotions that go with the memory?” (Case manager 4, interview 1)

“What was the role of others?” (Case manager 4, interview 1)

Sometimes, though, the complexity of the conflict or intensity of the trauma could be too great for general ongoing support conversations. Professionals would then refer their clients to specialized trauma care.

Grappling with forgetfulness could not only cause tension for the person with dementia, but also tension between person and loved one. More exploration of this was done with the help of a questions like:

“When is it most a hindrance [to either of you]?” (Case manager 3, interview 1)

“How does it keep [either of] you from attending to the things you want to do?” ((Psychologist, interview 2)

Some case managers also remarked that they too could experience a level of tension in supporting people with this pole, especially across supportive conversations:

“…and it can become rather unpleasant if you have to repeat such explorations… you could say that it interferes with my ability to make space for this issue.” (Case manager 4, interview 1)

This repetitiveness of exploration could also be a factor in exploring the other polarities.

In order to keep making space repeatedly, one case manager found it helpful to call to mind a specific perspective:

“People with whom the person has daily contact experience this much more frequently… In this moment [this person] can again get to a sense of release. This is how I can support [them].” (Case manager 4, interview 1)

Key transformative questions.

For the enhancing of inner space on the above issues, facilitating questions were found to be:

“What does this memory mean to you?” (Psychologist, interview 2)

“What are the most important things that [the challenges of memory] interfere with?” (Psychologist, interview 2)

Strengths regarding memory.

Strengths or potential strengths for this polarity were explored with a focus on the power of sharing memories and being the shared memory. The more intense access to distant memories, such as those of childhood, was also found to be possible source of cheerfulness and delight in the group discussions run by the psychologist. A key facilitating question in this regard was:

“What are cherished or pleasurable memories?” (Psychologist, interview 1)

For the discontinuity of forgetting, professionals learned to make special note of important meanings, and needs, so that they could quote these back to their clients later on. In so doing they tried to help strengthen the memory function by sharing it. Two guidelines were experienced as important in this regard. One, sharing should not be an authoritative, top down process, but more an open offering, so as not to be confrontational with regard to forgetting:

“I say things like: ‘a while back we talked about so and so, you mentioned that these things were important, do you recognize that [as personally important]?’” Case manager 1, interview 1)

Two, referring back to things that were important in the past helped strengthen especially if the professional could “frame it lovingly”, that is with an explicit invested concern:

“What touched me last time we spoke about this subject is that [these things] seemed to really be important for you” (Psychologist, interview 1)

For both poles, professionals also stressed the importance of involving loved ones in sharing cherished memories or framing memory lovingly. Some way to capture or anchoring these memories, for instance through photo books or diaries, was held to be an important way to continue to share memory lovingly beyond the early stage of dementia.

Believing–Knowing: exploring one’s predicament.

With respect to the believing—knowing polarity, people struggle with ways to surrender to their situation or with finding something that they can always rely upon or be certain of. Herein issues of faith and meaning are often central. Case managers and psychologist all spoke of the prevalence of this polarity in the lives of their clients and their loved ones. It was the psychologist though, who in two discussion groups about coming to grips with the diagnosis and implications of dementia, made most room to fully explore these struggles. In those groups an important opening question was:

“What do you face with regard to living with dementia?” (Psychologist, interview 1)

Tensions regarding ones predicament.

In the groups multiple clients told stories of the experienced fear surrounding trying to come to grips with the meaning of the diagnosis and the (possible) consequences of dementia on their lives. This fear kept them from giving themselves over to their current situation. In the discussion groups these sentiments were explored through these questions:

“What images do you associate with dementia?” (Psychologist, interview 1)

“What are fears for the future?” (Psychologist, interview 1)

For people in the peer groups and also in supportive conversations of case managers, tension could also be experienced concerning what to expect in moving forward. For them a search for certainty was more prevalent. In the further exploration, professionals often offered some explanatory framework about what is and what is not known about dementia, but often left the explanation open ended:

“I try to help somewhat in this area by explaining that we can’t be sure about how the disease will manifest itself. That we know for certain that you won’t get better, but that the particular process of the disease is unique for each individual.” (Psychologist, interview 1)

Case managers also reported that this search for certainty was especially an ongoing source of tension for loved ones. For them, mysterious changes in the way of being of the person with dementia often caused fundamental uncertainty about how to understand what was going on. Case managers, often then explored with the loved one what might be the dementia related causes of shifts in behavior:

“Often we then try to interpret changes in their partner together. During that exploration I do offer a possible ‘disease perspective’, based on what we know to often go together with a certain type of dementia.” (Case manager 1, interview 2)

A helpful question here was:

“What could the influence of dementia be [on the experienced changes]?” (Case manager 1, interview 2)

Key transformative questions.

Key questions found to facilitate a core perspective on and (a bit more) inner space around the tensions was:

“What is most important for quality of life?” (Psychologist, interview 1)

“What do we need to know to be able to deal with the situation?” (Case manager 1, interview 2)

Strengths regarding ones predicament.

With respect to strengths, explorations case managers, especially after noticing spiritual or religious symbols around the house or on the person, would explore the significance and possible power of a person’s spiritual beliefs, traditions and rituals with questions such as:

“What are your spiritual beliefs?” (Case manager 5, interview 1)

“How do they help you deal with dementia/ the current challenges?” (Case manager 5, interview 1)

The psychologist in her peer groups also explored special activities or pastimes that people could surrender to with the following questions:

“Are there special activities or pastimes that you can totally loose yourself in? That you are deeply at peace or one with?” (Psychologist, interview 1)

Answers to these questions could also lead to further exploration of explicit spiritual strengths such as prayer, but also to less implicit ones such as being at one with nature, music or art. With respect to potential strengths found in what you can rely upon, the psychologist gave much room to explore a possible strength giving overview of ones life with the questions:

“What are you grateful for in life?” (Psychologist, interview 1)

“Where do you feel blessed?” (Psychologist, interview 2)

Through such explorations people were regularly found to experience a more positive meaning of their life story as a whole, which gave them something to hold onto. These explorations could extend to all other strength related aspects of the other polarities in the model, informing an overarching story of “the beautiful life”.

Relation to previous research, strengths and limitations.

As mentioned in the introduction, there is a lack of existential or spiritual conversation tools that can aid dementia care professionals in their support of clients and loved ones. This is especially so for people with mild to moderate dementia [11]. Literature concerning conversational support mostly focuses on contextual (such as a quiet surrounding), non-verbal (for instance using touch), para-lingual (for instance speaking slowly) or semantic (such as avoid abstract language) conditions [12, 26]. Literature regarding spiritual support for people with mild to moderate dementia, strongly tends to focus on spirituality as religious background and how to better connect with that tradition or community [2, 10]. Such a view of the spiritual may lead non-religious professionals to disengage with this type of support and defer to the church [7]. To cover a broader spectrum and enhance experienced responsibility, new understandings and tools are needed. Based on our research we support Ødbehr’s [9] definition of what existential and spiritual support can be, following research on the views of clients and caregivers themselves: ‘‘Meeting people where they are and assisting them in connecting or re-connecting to things, practices, ideas and principles that are their core of their being–the breath of their lives”.

As far as we know, the developed and tested Diamond model is the first framework to aid professionals in providing ongoing existential and spiritual support to reconnect people with mild to moderate dementia and their loved ones to the core of their being. In her evaluation of spiritual care in a dementia care setting, Goodal [7] did come to a recommendation of three steps from the view of the professional: one, reflect upon on the person and situation to asses what is needed, two, realize what is needed through a co-constructive relationship and three, asses whether the relationship leads to an experience of restoration for the resident. Our model goes much further by making explicit how a co-constructive relationship may work in conversation. It also makes the assessment of what is needed in itself a co-constructive activity, through a relationship of co-researching. Lastly, we re-conceptualize and differentiate the purported goal of this type of support to go beyond the narrower notion of restoration. The enhancement of inner space, as an experience of release from inner tension, a freedom to relate to pressing concerns in a new way, and an opening up of (trans) formative possibility, allows for reconnection with what is of deep importance. The purpose is therefore to restore this deep connection, in ways that allow for new and enlightening modes of being. Hereby the found (components of) approaches can help structure conversational support in ways that best befit the specific needs and situation of clients at that moment. Two questions with regard to exploring strengths of daily routines also address possible future needs and living situations. These questions were successful in enhancing a sense of direction and control regarding the future. However, there is evidence to suggest that people with mild dementia can resist conversations about future arrangements because they do not want to be confronted with a future diminishment in autonomy [27]. Based on our research we can say that the timing for questions about future arrangements does seem most promising when clients are already experiencing challenges, such as getting up and down stairs, that press upon a sense of autonomy. Explorations of wishes for the future can then also have empowering effects in the now, as clients become involved in making supportive choices for their foreseeable future selves.

Within the literature we have found that certain forms of spiritual reminiscence offer some questions that are similar to those in the Diamond framework. MacKinlay and Trevitt [28] for instance, formulate good reminiscence as “asking people questions about: what gives their life meaning; whether they perceive that life is worth living; how they feel about getting older; what they find most difficult in life; their hopes, joys, fears and regrets; the spiritual and/or religious practices that are important to them; and their relationship with God or a higher power”. Our research confirms that some of these types of questions are helpful in conversational support. According to the reminiscence approach, the professional sets the course of what to explore. The Diamond framework, however, does not act as an agenda for an interview. It allows professionals to meet people where they are in terms of tensions and strengths, related to five existential or spiritual polarities, which have been found to be of fundamental importance. It also offers insight into the possible flow of supportive conversations, with an eye toward, but not a necessity of, transformation. It gives the professional more insight into the possible process and dynamics of different types of conversations. This makes the framework at the same time more flexible and more specific in its facilitation of support than reminiscence.

Of course our research and the resulting framework has its limitations as well. Although the model has been developed and tested through conversations with 62 clients and 32 loved ones, only six professionals participated in our study. It is probable that the participation of more professionals would have yielded a somewhat different span of questions and prompts.

Participating professionals did not receive additional training in existential and spiritual communication before trying out and further developing the dementia-Diamond model framework. The reason for this is that there were no specific Diamond model conversational approaches available at the beginning of our research and we wanted to develop these explicitly within the Diamond model framework through trial and error learning, so as to ground them in practice as much as possible.

Also, participants’ professional role and conversational setting has undoubtedly impacted the way in which they further developed the Diamond model in their practice. Though all Diamond polarities were encountered regularly in the conversations, there was a difference in what felt natural for professionals to give more space. The peer groups run by the psychologist for instance, offered more space to delve deeper intra-personally concerning tensions and strengths of the felt self and one’s life predicament. Case managers, often more practical trouble shooters in their conversations with clients and their loved ones, had a more natural inclination to delve deeper into daily routines and a trinity of needs. It is therefore quite possible that other types of professionals, such as chaplains, social workers or counselors would have developed different routes and questions more in tune with their work setting and professional background.

Lastly, with regard to methods, the conducted interviews where coded by the principle researcher and not by two researchers independently. It is possible that the coding of fragments would have been somewhat different had the latter occurred. Since participants always explicitly noted when conversational approaches and questions led to more inner space with clients or had promise to do so, we feel confident that possible coding bias was kept to a minimum. The found approaches were furthermore member checked at the end of the research process.