Liturgical Participation: An Effective Hermeneutic for Individuals with Profound Memory Loss

Abstract

In non-pandemic times adults with profound memory loss (PML) are isolated by virtue of the effects of their decline. The marginalization of this cohort has been greatly exacerbated by the present pandemic. Individuals and their caretakers are not seen as active members, but as objects of pastoral care. Leaving individuals outside of the present moment, PML makes it difficult to communicate or function. They may behave in ways that would be antithetical to their thinking. Individuals were isolated from their homes and worshiping communities. In this paper I will present a liturgical hermeneutic of Liturgical Participation. I will illustrate its effectiveness as a catechetical methodology for individuals experiencing PML. The methodology of Liturgical Participation will aid ministers in the work of raising the consciousness of individuals as active participants in the work of God.

1. Introduction

The nursing home facility in which I work houses around 170 residents. Of those, many are experiencing varying levels of memory loss due to the myriad conditions that result in the symptoms of dementia. Many of these residents live in the several units in the building. For a select population experiencing profound memory loss (PML), there is the specialized memory care unit. This is a dedicated, and locked, unit for those individuals who require greater levels of specialized care. Individuals facing PML have experienced degrees of marginalization, stigmatization, and sidelining within society. Unfortunately, this has been the case even within communities of faith. Even within congregate care communities, PML populations can experience marginalization as communities of caregivers work to cope with behaviors while providing care to a fluid dynamic of residents and their individual expressions of PML.

Congregations, their pastors, and lay leaders may find PML members to be difficult to include within community activities. It can even be easier to simply sideline PML members, and their caregivers as, primarily, objects of care. This objectification further marginalizes PML members as non-participating in the liturgical life of the community. PML members may be unpredictable in their behaviors, even acting contrary to the community’s norms. PML dislocates the individual from their current environment. It might make it difficult for PML members to engage with others or a liturgical activity to the degree they once did. Like their congregational counterparts, spiritual care workers in congregant care settings can participate in these same marginalizing activities. Congregational leaders and chaplains implicitly marginalize these groups by assessing PML members as incapable or disinterested in certain activities. An alternative marginalization is the objectification of PML members as primarily objects of care rather than fully participating liturgically and adding to, and thickening, the richness of the community’s liturgical life. I would suggest that this marginalization is due to the concomitant effect of an implicit bias of ableism and a liturgical hermeneutic of reception based upon intellectual assent. This marginalization has been exacerbated by the present COVID-19 pandemic and its requisite lockdowns and social distancing obligations. These requirements in the time of COVID-19 exert pressures on both congregations and spiritual care within congregant care communities. I would suggest that an alternative hermeneutic that can provide verbiage to both spiritual leaders and lay people that moves beyond intellectual assent may mitigate the biases of ableism and cognitively contingent liturgical hermeneutics.

The hermeneutic I would like to suggest, Liturgical Participation, is based upon the dialogue of Reception Theory and Martin Luther’s sacramental theology, called Sacramental Union. Liturgical Participation eschews the intellectual focus of the above bias in favor of the internal lifeworld of the liturgical participant engaged in dialogue with the lifeworld of the liturgical text. The leitourgia of worship is the work of God on behalf of the people, and therefore it is God’s lifeworld made available and curated, with which the worshiper engages. Liturgical Participation as a liturgical hermeneutic strengthens the participatory benefits to both worshiper and presider. This hermeneutic benefits leaders to see PML members as fully participating and engaging with worship. Liturgical Participation is encouraging PML members themselves and their family members into receptivity of their fully participatory experience of God’s promises made available in the Means of Grace. These individuals are fully engaged in worship as they progress through the stages of PML and are therefore valuable members of the community. They thicken the complexity and richness of their home communities and worshiping communities within congregate care centers. In this paper, I will provide a brief outline of the challenges facing PML members as they participate in worship. I will then, briefly, outline the dialogue partners of Jauss and Luther. I will then close with a brief outline of possible applications of Liturgical Participation and discuss the effectiveness of this hermeneutic for challenging the marginalization of PML members in their communities of worship.

2. Profound Memory Loss

PML is a complex and varied disease. While Alzheimer’s is the most common form, dementia comes in many forms. Even within those forms, how it effects the individual is varied and over time can progress at different rates. However, the end stage of the disease is always the same. PML is always terminal. According to the Alzheimer’s Association there are three stages to PML that progressively degrade both memory and physical capacity as the brain’s capability to access neuropathways diminishes.1 The first (mild) stage may not be noticeable to others, but is associated with misplacing common objects or forgetting words. An individual in the mild stage may be able to continue to work and drive; they are still capable of being independent. The second (moderate) stage is marked by an increasing dependence on the care of others. This second stage tends to be the longest and can span years. The final (severe) stage creates the greatest level of dependence and will require ever-present care. At this stage the communicative level has become heavily impaired. The individual may not be aware of their surroundings, and is no longer oriented to person, place, and time. These pervasive effects of PML are caused by their isolation, both from others and from themselves. The COVID-19 pandemic has provided an opportunity for further isolation of this population, even within congregant care facilities.

The present social constraints of the COVID-19 pandemic have combined with the socially isolating nature of PML to further marginalize this community. As communities of all types contend with social distancing obligations, PML individuals have become further isolated. Communities of faith moved their faith practices to online platforms. These online platforms are difficult for older adults to navigate. Imagine the impossibility of PML individuals attempting to access online services. Even within congregant care facilities, social distancing obligations have greatly curtailed group settings. Residents are not able to visit with family and friends within the facility nor visit outdoor spaces or their former homes on leave of absence. Pastors and other congregational leaders are no longer able to visit residents within these facilities. Even within congregant care facilities, communal dining is no longer the norm. Nursing and support staff are stretched thin with needing to provide closer individualized support to socially distanced residents. Added to the increased workload is the increased anxiety for staff about contracting the illness, especially by those considered high risk. The pandemic exacerbates the ways in which PML individuals are isolated and marginalized even within systems that are intended to aid and support them. Spiritual care leaders must be more aware of this isolation as the prevalence of dementia, especially Alzheimer’s, is expected to grow in the coming decades.

Anticipated increases in Alzheimer’s and other kinds of dementia diagnosis means PML is a growing concern to communities of faith. According to the Alzheimer’s Association, 5.8 million people 65 years and older are experiencing Alzheimer’s dementia.2 In just five years there will be a projected 22% increase in Alzheimer’s diagnosis in the United States.3 By 2050 the total number of Alzheimer’s diagnoses will be 13.8 million.4 With these projected increases, it is imperative that leaders in faith communities orient towards inclusive views of participation in worship in order to mitigate the isolating effects of ableist biases. Attending to these individuals, as well as their caregivers and family members, in such a way as they are not simply objects of pastoral care will enrich both the community as well as the lives of PML sufferers and their loved ones. It is necessary to be aware of and cope with the consequent challenges posed by PML to best curate the liturgical activity for the differently abled.

The dual biases of ableism and a hermeneutic based upon intellectual assent can hinder how members with PML are viewed as fully participating in the community’s acts of worship. Ryan et al. illustrate the issues facing PML individuals within communities of faith, “While individuals with dementia clearly have increased physical needs over a normally aging adult, the mere presence of these needs negatively alters the way they are perceived and treated by others…”5 Problematizing PML sufferers marginalizes them as objects of care, otherizing them as opposed to the undamaged us. This marginalization diminishes both the individuals with PML and their communities of faith. It is, therefore, fortuitous that observational studies illustrate that individuals experiencing PML function the highest in environments in which they are personalized.6 According to a meta-analysis of studies on lived space, the concepts of belonging, meaningfulness, safety and security, and autonomy were important to individuals with PML and encouraged personalization.7 The authors noted, “The comprehensive understanding of the categories described is captured by the latent theme: ‘Living with dementia is similar to living in a space where the walls keep closing in.’”8 Dementia narrows the lives of those enduring the progress of the disease. The above categories provide ways in which to expand the individual’s lived environment and developing this hermeneutic can be a point of contact in that regard. If Liturgical Participation is to be a useful hermeneutic to PML individuals, these above criteria ought to be presentable in the dialogue of the interior world of the worshiper and God. Liturgical Participation may aid in supporting the lucidity of individuals experiencing PML and supporting their comfort by advancing belonging, meaningfulness, safety and security, and autonomy by attuning faith leaders to the experience of a narrowed world.

3. Liturgical Participation

The hermeneutic of Liturgical Participation utilizes the works of Hans Robert Jauss in his Reception Theory as well as the Sacramental Union of Martin Luther. Liturgical Participation provides an opportunity to eschew the intellectually focused hermeneutic of participation used by many westerners. Andrew Sloan’s narratively based theory of personhood situates this conversation within an ontologically appropriate view. Sloan’s ontology situates identity within the participation of the individual within their own story, the stories of home communities, and the story of God. This relational-participatory view of personhood provides us with a departure point for the necessity of Liturgical Participation as a hermeneutic for liturgy, especially for those with PML and their circles of influence. Sloan’s ontology closely parallels the categories of Forsund et al. and the necessity of repersonalizing the world of individuals experiencing PML. The strength of Liturgical Participation is the repersonalizing effect of the meeting of God’s horizon with our own internal horizon in the liturgical event.

Sloan’s suggestion of a narratively relational personhood presupposes an embodied quality of our humanness, and therefore our value to God and others. This view of personhood eschews the intellectual focus of our current social bias. Sloan writes, “…We are embodied beings, and it is as bodies that we experience the world and enter into relationships.”9 It is our embodiment, our interconnectedness and interdependence to others and to God, that curates our being, and therefore it is not something that can be lost, even with the insidious declines of dementia.

Luther and Jauss act as dialogue partners in the development of the hermeneutic of Liturgical Participation. Liturgical Participation captures the Aesthetic Experience of a worshiper engaged in dialogue with the life of God.10 Jauss uses the term lifeworld to describe the essential phenomenological core of both the reader and the text. The lifeworld, or horizon, of the text in the case of the liturgical text is God’s life. God’s horizon is made inhabitable by the appropriateness of the liturgical text. The worshiper engages with this inhabitable world. God’s lifeworld is God’s own horizon or world view.11 The worshiper has found his or her own lifeworld to be inadequate to understand his or her experience in the world.12 In a given text, if appropriate, the worshiper finds ways of understanding these life experiences that cohere better to the world than his or her current internal horizon.

Jauss follows the writing of Hans Georg Gadamer in his understanding of the present activity of the curation of the interior world of the text. For both Gadamer and Jauss, this interior world made available is not a recapitulation of a past event, nor an entirely new world.13 Instead, the interior world of the text is curated by the dialogue between reader and text and is made new again within each interaction. This dialogue is called the Aesthetic Experience. The Aesthetic Experience is like the meeting of old friends in a new interplay in the sharing of stories and emotions. The reader attunes to the lifeworld of the text because an appropriate text answers the questions posed by the reader in a dialogue. Relating to the text dialogically aids in the curation of a new internal horizon that better responds to the reader’s experience. Jauss writes:

In a manner of speaking, Aesthetic Experience is effective both in utopian foreshadowing and in retrospective recognition. It perfects the imperfect world not merely by projecting future experience but also by preserving past experience which could continue unrecovered along the path of mankind, were it not for the luminosity of a poetry and art which transfigures and monumentalizes it.14

The Aesthetic Experience is curative to the misapplication of the internal horizons of the reader. The reader’s understanding of the world is incomplete or misapplied, and therefore, in their dialogue with the text, the reader hopes to come away with a new horizon that can be more effective in its application in the world. In the case of the liturgical text, the inhabitable world presented is God’s life made possible by God’s arrival in God’s promises.

For a liturgical text, the horizon being met is God’s horizon because what we call the liturgy is the administration of God’s Means of Grace. The incipient presence of God’s lifeworld differs from encounter or anamnesis as it is neither that Christ is simply present, nor is it simply remembering the event of the cross. The Aesthetic Experience is making available Christ’s promises and their application in, with, and under the existential anxiety of the worshiper engaged in dialogue with the God revealed in the backwards nature of the bloody cross. Jauss’s reception theory parallels well with Luther’s sacramentality in that God’s self-revelation is only found in the Means of Grace. It is the access to the promises of Christ that makes the Aesthetic Experience of Liturgical Participation existentiality curative. The arrival of God’s promises in, with, and under the Means of Grace is the inhabitable world of God on behalf of the worshiper.

In Luther’s work, the Aesthetic Experience is equivalent to the Happy Exchange. In the Happy Exchange the believer is united to Christ by faith. This uniting is motivated by the existential dread of a life separated from God fleshed out in the mind of the Christian by the accusations of the Law. In faith, the believer’s fallen nature is exchanged for Christ’s righteousness and Christ’s multiple benefits.15 Luther compares the uniting of the believer to Christ to that of Christ’s promises united to the physical substance of the. Luther writes on the sacrament of the altar, “Here, too, out of two kinds of objects a union has taken place, which I shall call a ‘Sacramental Union,’ because Christ’s body and the bread are given to us as a sacrament.”16 Luther’s Happy Exchange parallels Jauss’ Aesthetic Experience. The reader/worshiper perceives her worldview as inadequate to understand the world around her. In her existential crises, the worshiper turns to the lifeworld of God curated in the promises of Christ, available in the liturgy. Because the Aesthetic Experience is predicated by the inadequacies of the internal horizon of the worshiper, which motivates the engagement with God’s lifeworld, the worshiper exits the Aesthetic Experience with a transformed internal horizon. They have integrated this engagement with God into their internal horizon to better interact with the world around them.

The Aesthetic Experience of Liturgical Participation is eminently repeatable. Its specificity and personal peculiarity eschew the intellectual focus of the ableism described earlier. Consequently, utilizing this hermeneutic would provide a departure point of full participatory potential irrespective of the perceived capabilities of the participants. This frees both presider and worshipers to let God show up how God wills. In this case, irrespective of capacity, the worshiper inhabits God’s life, not based upon their own capacities, but because God approaches the worshiper. It is God who performs the leitourgia. The inhabitability of the Aesthetic Experience is motivated by God’s arrival on behalf of humanity. For individuals facing PML, this allows them to show up how they will. Its repeatability means the Aesthetic Experience can be engaged over the lifetime—ever changing and ever repeating. Liturgical Participation is an appropriate way to address both the narrowing horizons of individuals with PML as well as the biases of faith leaders and laity.

4. Practical Examples

Utilizing the approach of Liturgical Participation necessitates both active curation of the liturgical event and the work of consciousness raising in both the presider as well as the worshiping community. Consciousness raising is the attempt to bring people to awareness of an issue or concept. The presider’s practice with individuals experiencing PML may move across both traditional parish settings as well as congregate care settings. This will provide a beginning conversation to see how a pastor can utilize Liturgical Participation in a mystagogical and practical way. I would like to provide examples of the task of consciousness raising, and an example of three liturgical events I have used in my own congregant care setting.

Consciousness raising for both a ministry leader, as well as the congregation, encourages awareness and attunement to what God is up to within the liturgical event. The goal of consciousness raising is not to make the liturgical event more holy or more effective. Raising the awareness of both presider and the worshiping community to what God is up to allows for the opportunity of connection. The community gathered in worship is presented with the arrival of Christ and his promises. Attunement to that event encourages the widening of the view of the worshipers. It encourages elasticity and resilience in thinking and feeling and the connecting of the worshiper’s dialogue with God to their own experience in the world. Attunement and elasticity are engaged and encouraged when presiders purposefully utilize the historical and scriptural nuance of Christian worship. For many worshipers, there is a disconnect between Christian worship and real life. When the minister is attuned to the realness of worship, the minister is situated, historically and theologically, to guide the attunement of the worshiping community.

Across the many denominations of Christianity there is greater and lesser familiarity with the historic and scriptural roots of the myriad worship styles across those denominations. On their surface, some of those worship styles seem far removed from a historic liturgical style. Pastors and ministers across the spectrum of worshiping styles would benefit their communities by understanding the historical and scriptural sources and inspirations for their local style and habits. The work of attunement and consciousness raising is not the resurrection of a deceased golden age of liturgical life. Liturgical Participation begins with the rapprochement of pastors to their own history and sources from which they can then raise the consciousness and attunement of their community.

Presiders can commit to this mystagogical task by directly connecting hymn and song selection to scripture texts and sermon themes. Working to connect the efforts of small groups, Bible studies, Sunday school curriculum, and youth and family programs will provide a hedgerow around the common theme of God’s promises made available in worship. The presider can also connect the Means of Grace, actively, within his or her sermon/homily. Raising consciousness among parish members might be connecting the entirety of the worship experience within the sending/benediction at the end of the service. Connecting the liturgical event as the compulsion to serve and act in the world attunes the worshiper to how Liturgical Participation is the impulse to be masks of God in the various vocations they inhabit during the week.

In my own setting, I have begun experimenting with ways in which to curate liturgical events through the Liturgical Participation lens. With PML residents particularly, I want to engage the categories identified by Forsund et al. of belonging, meaningfulness, safety and security, and autonomy. Curating liturgical events with these categories in mind may encourage lucidity and personalization of individuals with PML. There are three such groups that illustrate this in action. The three groups are: Hymn-Story, Bible Art, and Sights and Sounds of Faith.17 These three groups provide a testing ground for Liturgical Participation as it relates to the categories Forsund et al. identify as important to repersonalization in the PML context.

My goal with these groups is to encourage remembering of older, formative, memories. Within the PML community, these older memories are more resilient. Each group emphasizes different senses and historic styles of worship. Within a congregant care community there is not always a clear hegemony of backgrounds and experience. Consequently, the presider may want to widen the historic sources used in curating liturgical events. Each group is approximately 30 min. On average a group has about 12–20 residents present. The meeting space is the common room in the memory care unit. Background noise and interruptions are frequent by staff and other residents coming in and out of the space. The theme is selected to connect to the Gospel lesson assigned for that week in the Revised Common Lectionary. Each week a single hymn and image is used for each video and in-person group.

The Hymn-Story group utilizes a single hymn to explore over the course of a single meeting. The same hymn is used throughout the broadcasted videos during the week as well. The group opens with an invocation, prayer, and reading of the Gospel lesson. During the program, I play two renditions of the song, preferably by different performers. Between playing the two renditions, I provide a short history or story about the hymn or hymn writer. After the second rendition, I do a short devotion connecting the Gospel reading to the hymn and the larger theme for the week. I break up this discussion looking for recognition or reactions from the residents and attempt to elicit expressions of feelings or memories associated with the hymn. The second program, Bible Art, approaches the same thing but with visual art rather than music.

Like the previous program, Bible Art is a 30-min. program based upon the Gospel lesson for the week and its corresponding theme. I choose a piece of historical art and utilize that as the center of the program. Bible Art starts with the same opening pattern as outlined above. In this case, the program is meant to stimulate visually based memories and emotions rather than auditory. In this program, I provide less historical background on the artwork and focus more on composition and style to evoke an emotion and connection to the theme. The third program attempts to utilize this hermeneutic in terms of the resident’s experiences within their communities.

Sights and Sounds of faith combine both the auditory and visual stimulus of the previous two groups and focuses on the experiences of residents in unstructured church programming such as potlucks or youth events. The program is structured the same as above. In the body of the program the focus turns to sights and sounds of activities common in communal church activities. I have found autonomous sensory meridian response (ASMR) videos to be a close approximation of these experiences. ASMR is a genre of video that emphasizes sounds that have a high-tactile component to elicit a synesthesia response.18 These videos have been used for relaxation, especially amid sensory overload. The ASMR video has the capability of situating the worshiper back in their embodied experiences. An example video I used was a family frying fish in oil. This video was associated with Ash Wednesday and the start of the Lenten fast.

Each of these programs is informed by the hermeneutic of Liturgical Participation and the goal of repersonalization as mentioned earlier. Utilizing this hermeneutic, parish leaders, members, individuals experiencing PML, and their loved ones can better curate liturgical events to encourage and redeem the full participation of the differently abled. Consciousness raising and specific curation of events will thicken and enrich the experience of the whole community.

5. Effectiveness of Liturgical Participation

The experience of PML is both the dysregulation of the self as well as the narrowing of the world of individual with PML. It is the case, then, that two roles for the Aesthetic Experience exists. The Aesthetic Experience curates an inhabitable world responsive to the questions of the worshiper. This inhabitable world provides for an externalized tool for self-regulation and the widening of the individual’s world. Looking again at the themes outlined by Forsund et al. we can elucidate some possible questions being asked of God’s life by the worshiper experiencing PML. Forsund et al. articulate the following important categories when considering the self-regulation of individuals experiencing PML: belonging, meaningfulness, safety and security, and autonomy. These categories allow for individuals experiencing PML to maintain their sense of self through their environment and maintain their self-regulation.

The curated life of God in liturgy is an opportunity to address Forsund’s categories in the sacred space. Simplified and historically grounded aspects of liturgy, as well as narrowed choices, may seem counterintuitive if we imagine the PML individual as struggling with a narrowed world. PML is partly isolating because of the dislocation of the individuals from their present moment and time. In God’s life it is a function of God’s accessibility to the individual, not their capacity to intellectually assent or be emotionally present. Liturgical Participation is ideally situated to provide an external source for self-regulation and an expansiveness of time and place. The comfort provided by the curation of God’s lifeworld is peculiar to this liturgical experience and is certainly repeatable. This hermeneutic redeems the isolating aspects of PML and leverages them to effect transformation for both the individual experiencing PML as well as her community around her. This redemption thickens the experiences of the community, eschews the ableism of our culture’s worldview, and transforms horizons as Liturgical Participation better answers the questions posed by the multiplicity of worshipers.

The COVID-19 pandemic has created many new and unexpected barriers and opportunities to communities of faith. For those suffering with PML, there has been a greater exacerbation of isolation, loneliness, and a declining access to the very relationships and environments that encourage greater lucidity. We can utilize the concepts of belonging, meaningfulness, safety and security, and autonomy as a key to gauge how effective Liturgical Participation is as an hermeneutic within the context of PML. In the Aesthetic Experience these concepts are points of dialogue between the internal world of the worshiper and the world of the text. The inhabitable engagement with God is a lived space in which these questions can be posed. Exiting the Aesthetic Experience the worshiper is transformed as she or he integrates the answers received.

6. Conclusions

There is an issue of marginalization of individuals experiencing PML due to the perceived deficiencies of individuals with PML as well as the systematic challenges present within systems of care. These challenges have been exacerbated by the present social struggles in our world, as well as the COVID-19 pandemic. The hermeneutic of Liturgical Participation outlined here can provide a perspective on participation that highlights the activity of God engaging the individual as she is, in her present moment. It is this particularity that illustrates the helpfulness of this view in the present context. With this hermeneutic in mind the worshiper, presider, and communities of faith can see individuals experiencing PML as engaged in the life of God made available in liturgy. With this perspective, each worshiper is engaged for her own internal lifeworld rather than meeting an external threshold of capacity. Liturgical Participation is a helpful hermeneutic to understand how differently abled people can engage in worship, even as their capacities are uncommon within the community.