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May 2022 Article of the Month
by John Ehman, Editor, ACPE Research Article-of-the-Month
and Manager for Pastoral Care, Penn Presbyterian Medical Center, Philadelphia PA
Palmer, J. A., Hilgeman, M., Balboni, T., Paasche-Orlow, S. and Sullivan, J. L.
"The spiritual experience of dementia from the health care provider perspective: implications for intervention." Gerontologist 62, no. 4 (April 20, 2022): 556-567.
SUMMARY and COMMENT: This month's study involved interviews with ten chaplains, who were part of a total group of 24 healthcare providers purposively sampled for their insight regarding the "salient spiritual needs in persons living with dementia" [p. 558]. While participants were recruited from community-based/long-term facilities in the Greater Boston area, the findings may well have value in other settings and circumstances. Lead author Jennifer A. Palmer is an Assistant Professor at the Boston University School of Medicine and an Investigator with the US Department of Veterans Affairs' Center for Healthcare Organization and Implementation Research. The research group includes a chaplain author, Rabbi Sara Paasche-Orlow, who is Director of Spiritual Care at Hebrew Senior Life and who was a member of the initial advisory committee for the Transforming Chaplaincy project.
With an aim to help "redress...research gaps to ultimately inform spiritual intervention design," the authors sought the expertise of providers whose "clinical experience may offer well-grounded insight into the spiritual experiences of persons living with dementia and hands-on appreciation of how these spiritual experiences vary within dementia as well as across dementia and other medical conditions" [p. 558]. In addition to the ten chaplains (four Jewish, four Protestant, and two Catholic), six nursing staff members, six social workers, and two activities professionals participated. Six of the participants self-identified as "spiritual but not religious" and two identified as "not religious or spiritual" [--see Table 2, p. 560]. Semi-structured interviews were conducted privately and in-person, lasting 22-59 minutes (with a mean of 40 minutes), following an 11-item guide (available as supplementary material from the journal website). The questions "...explored topics in the context of dementia including (a) the nature of spiritual needs, (b) barriers and facilitators to meeting those needs, (c) family members' and friends' role in helping to meet those needs, and (d) providers' role in and associated preparation for helping to meet those needs [p. 558].
Two major themes, with a handful of sub-themes, emerged from the data. The authors consider these in terms of implications for "the 'what,' 'who,' and 'when' of dementia-focused spiritual care" [p. 583]. Among the findings:
THEME 1: -- Spiritual experience in dementia differs from that in other medical conditions
- 1a. Fear in dementia (with implications for the "What") --
- "Many participants described dementia as a set of conditions that invoke the spiritual challenge of fear more so than some other conditions. Fear may represent an obstacle to the spiritual need of peace." [p. 560] Participants spoke of the impact of a sense of loss of mind or self. "Indeed, our participants alluded to dementia-induced loss of self as causing fear in those affected, a particularly notable impact compared to other medical conditions." [p. 560]
- 1b. Profound loss of self in dementia (with implications for the "What") --
- Whereas sub-theme 1.a emphasizes fear as a specific reaction to a sense of loss of self<, sub-theme 1.b focuses on the spiritual impact of the loss of self per se. "Several participants emphasized how identity is a spiritual need and how salient the spiritual impact of loss of self in dementia is, making it stand apart from other conditions. ...One participant stated how the loss of cognitive processing abilities and of prior long-held sense of identity in dementia leads to a highly different illness experience than in some other conditions (i.e., mobility impairment, renal failure)." [p. 560] "As one of our participants emphasized, this disruption in self-identity is the primary spiritual challenge in dementia, leading to a disruption in relationship with one's self, other persons, and God." [p. 563]
- 1c. Progressive and incurable nature of dementia (with implications for the "What") --
- "Several participants mentioned the terminal nature of dementia as a salient feature compared to a number of other conditions, that is, nonterminal ones; ...threaten[ing] the spiritual needs of peace and of hope." [p. 560] One way to characterize this loss is as a loss of agency. "...[D]ementia's intransigence differentially causes grief, a reaction to spiritual loss." [p. 562]
- 1d. Impacted ability to access faith in dementia (with implications for the "Who") --
- "Several participants contrasted the ability to access faith as a form of spiritual support in physical disease to a waning ability to do so in dementia. This impaired ability may manifest as declining recall of one's usual supports or one's reduced capacity to capitalize upon these supports." [p. 562] One example: "...persons living with dementia lose their ability to remember what typically provides them with support, such as saying prayers; thus, access to faith is limited by not remembering what spiritual resources exist." [p. 562] "With other serious illnesses, like cancer, it can be hard to access spiritual resources like faith communities due to feeling ill and being less mobile. In dementia, however, these barriers may be compounded further." [p. 564]
THEME 2: -- The need for spiritual intervention at the mild stage of dementia
- 2a. Awareness in mild dementia and its influence on spiritual distress (with implications for the "When") --
- "Multiple participants felt the mild stage of dementia was unique compared to later stages. Persons living with dementia at the mild stage may have awareness of their deficits; this awareness of their ongoing losses and confusion may compound the potential for spiritual distress. ...[S]uch awareness leads to more spiritual distress than in later stages of dementia...[and]...awareness earlier in the dementia process rendered spiritual distress more salient for persons living with dementia than for caregivers. ...[E]ven if awareness of dementia is attenuated, persons living with mild dementia can sense their own confusion, which leads to significant spiritual distress." [p. 562]
- 2b. A window of opportunity (with implications for the "When") --
- "Participants also felt that the mild phase of dementia marked a unique opportunity for spiritual intervention within the illness trajectory. ...By intervening early, persons living with mild dementia can be assisted with spiritual concerns such as leaving behind a meaningful legacy as the end of life approaches." [p. 562] "Not capitalizing on cognitive processing while it remains represents a missed opportunity for prolonging the 'quality' and 'dignity' of individuals' lives.," but using this "time-dependent...'window' for spiritual intervention" could allow "stakeholders...to optimize quality of life for those with dementia." [p. 563]
The authors draw connections between their findings and those of other studies and mark ways that their work builds upon previous research. For example, other studies have noted the role of fear in dementia, but the present study "advance[s] these previous findings by comparing the two sets of experience (i.e., in dementia vs in other serious illnesses)" [p. 563]. They encourage the development, in particular, of interventions that address both fear and loss of self (compared to loss generally experienced in terminal illness), arguing that no single existing spiritual intervention -- e.g., Dignity Therapy, Spiritual Reminiscence Therapy, or Namaste Care -- seems to cover both needs. They point to a Preserving Identity & Planning Advance Care intervention [see Related Items of Interest, §V, below] as a non-spiritual model that might be broadened to address spiritual needs. Also, the present findings are said to reinforce a need to see dementia as a terminal illness and bring the resources of palliative care into the picture early.
The themes here are actionable. Regarding sub-theme 1.d, pertaining to the impact of dementia on a person's ability to access faith resources:
While the spiritual nature of persons living with dementia is not lost, our participants underscored how progressive loss of cognitive abilities impede independent access to spiritual aid. Such access might be facilitated by others, by assisting with and reminding persons living with dementia of religious service attendance, prayer, and other rituals; and by making religious and spiritual rituals dementia-friendly. ...[D]ementia-friendly spiritual care is characterized in part by being familiar in content, being spoken slowly and with simplicity, and using multisensory experiences such as spiritually evocative images and music from the person's past. [p. 564]
And, special emphasis is placed on the theme of the "narrow 'window of opportunity'" [p. 564] in the early stage of dementia.
...[I]t is well established that lack of awareness or denial may be present among those with dementia. Regardless, our findings uniquely point to the need to grant persons living with dementia the benefit of the doubt; we need to be prepared to address spiritual distress and promote spiritual well-being when either explicit or implicit awareness of one's own cognitive challenges may be present. Indeed, this study found a compelling opportunity to intervene with spiritual care early in the dementia experience. [p. 564]
Limitations are appropriately acknowledged: "...[O]ur sample was homogeneous in race, ethnicity, and education level; though there was variety in religious affiliation of chaplains, these affiliations did not extend beyond Jewish and Christian traditions" [p. 565]. Therefore, the authors propose avenues for further research, including exploration of "specifics that our interview guide did not [probe for]: (a) person-level spiritual experiences in dementia (rather than just higher-level reflections on spiritual experience) and (b) discussion of how perspectives on spiritual experience in dementia may be similar or differ by varying faiths" [p. 565]. Also, future study could "build upon our comparison of differing spiritual needs across dementia and other medical conditions to similar spiritual needs across them" [p. 565]. Ultimately, the authors press for research in the service of developing dementia-appropriate interventions for spiritual care, in light of the complexity of that task: for instance: "Narrative-oriented spiritual interventions that often are successfully used with other illnesses may not be feasible or most effective with the cognitive and linguistic deficits in dementia" [p. 565]. "...[R]esearchers will need to examine how to tailor the form, content, and timing [of interventions] to spiritual needs across the spectrum of mild, moderate, and severe dementia" [p. 565].
This is a thought-provoking article that implicitly affirms the multidisciplinary nature of good care for dementia patients, with chaplains being a strong presence in the mix. This reader would have preferred that the quotes from participants be identified by discipline, if only even for the direct quotes in Table 2 [pp. 561-562], but this is not a major problem for the presentation. The interview guide (published as a supplement) included one item that touched on interprofessional dynamics: "What should be the professional role of other health care professionals [other than your profession] in meeting the religious and/or spiritual needs of persons with mild dementia?" (--with a suggested probe: "What should be the role of social workers/nurses/physicians and/or chaplains?) However, interprofessional dynamics may be a richly practical area for continued study and might be pursued through discipline-diverse focus groups rather than individual provider interviews. The current research should prove to be a sound point of departure for many avenues of further research.
The bibliography of 44 citations is relatively up-to-date, with one reference from 2021 but 17 references from 2018-2020.
Suggestions for Use of the Article for Student Discussion:
This month's article should be easily readable for any level of chaplaincy student, engaging them not only in the subject of dementia but the endeavor of research. It also has the advantage of addressing such a widespread concern that, while the locus of the study was long-term/community-based care, students in acute care settings should be able to relate well. Discussion could begin with some sharing of students' own experience with dementia patients, whether those patients seemed to be in an early or late phase, what needs they observed in them, and how the chaplains modulated their approaches to providing care vis-a-vis typical patients without cognitive impairment. Did the chaplain particularly feel frustrated or saddened by their interaction? Did they think of dementia as a terminal illness when providing care? How much did they pick up on a theme of fear? While reading the article, which of the study's six sub-themes stood out to them? Our authors link spiritual and emotional needs in their introductory section [--see p. 557]. How do the students see this connection? What do they make of the statement that "spirituality may 'unlock' persons living with dementia from their cognitive limitations" [p. 557]? Students may wish to read Christine Bryden's personal perspective on living with dementia "Challenging the discourses of loss: a continuing sense of self within the lived experience of dementia" [Dementia (London, England) 19, no. 1 (2020): 74-82], cited in our article. Students may also find the direct quotes in Table 2 [pp. 561-562] evocative, and these could serve to spur additional thought on the subject. Some of those quotes might bring out students' personal fears of dementia. Finally, students may be intrigued to learn more about the interventional models described on p. 563: Dignity Therapy [see Related Items of Interest, §IV, below], Spiritual Reminiscence Therapy, or Namaste Care; and so the discussion could lead to a subsequent session on one or more of those approaches.
Related Items of Interest:
I. Jennifer A. Palmer and Sara Paasche-Orlow recently teamed with other colleagues on the following scoping review:
Palmer, J. A., Smith, A. M., Paasche-Orlow, R. S. and Fitchett, G. "Research literature on the intersection of dementia, spirituality, and palliative care: a scoping review." Journal of Pain and Symptom Management 60, no. 1 (July 2020): 116-134. [(Abstract:) Context: Dementia marks an increasingly prevalent terminal illness for which palliative care, including spiritual care, could improve quality of life. Research gaps exist in understanding the intersection of dementia, spirituality, and palliative care. Objectives: We conducted the first scoping review examining the nature and breadth of peer-reviewed studies across these three topics to guide future research. Methods: The scoping review followed methods from The Joanna Briggs Institute Reviewers' Manual (2015). We developed a priori a scoping review protocol outlining the population, concept, and context for study; data sources; search strategy; inclusion/exclusion criteria; and procedure for screening, extracting, and analyzing data. Results: The final sample consisted of 19 studies with the following themes: characterizing spiritual needs, preferences, and resources; characterizing palliative or spiritual care; predicting provision of spiritual care; and assessing spiritual care interventions. Eighteen studies were published in the past decade, and 11 studies were based in Europe. Most studies focused on long-term care settings, grouped stages of dementia or did not specify dementia stage, and investigated interventions indirectly related to spiritual care. Many studies were limited in sample size and generalizability/transferability and used less sophisticated research designs. Conclusion: Research across dementia, spirituality, and palliative care needs to examine settings beyond long-term care, distinct stages of dementia, and formal spiritual care interventions plus use rigorous study designs (e.g., randomized clinical trials). Such research could advance practice and policy that enhance quality of life for tens of millions of persons with dementia and their family members worldwide.]
II. The literature on dementia is extensive, and Palmer and colleagues provide a nice bibliography, but for some other recent articles of possible interest that are not cited, see:
Camacho-Montano, L. R., Perez-Corrales, J., Perez-de-Heredia-Torres, M., Martin-Perez, A. M., Gueita-Rodriguez, J., Velarde-Garcia, J. F. and Palacios-Cena, D. "Spiritual care in advanced dementia from the perspective of health providers: a qualitative systematic review." Occupational Therapy International (2021): 9998480 [electronic journal article designation]. [(Abstract:) BACKGROUND: Worldwide, 47 million people suffer from dementia. Despite recognizing the importance of spirituality within dementia care, it is still unclear how this should be integrated into dementia services. AIM: To explore the perspective of health professionals regarding the spiritual care of people with advanced dementia. METHODS: A qualitative systematic review was performed following the Enhancing Transparency in Reporting the Synthesis of Qualitative Research guidelines for the study design. The inclusion criteria included original articles published from January 2008 to March 2019, using either qualitative or mixed methods. The quality of the articles included was evaluated using the consolidated criteria for reporting qualitative research, Standards for Reporting Qualitative Research, and the Critical Appraisal Skills Programme. Synthesis of findings was performed using thematic analysis. RESULTS: Twelve studies were included in the review. Seventeen categories were identified, grouped into four themes: (1) the perception of spirituality, including the failure to address the same, (2) the spiritual needs of people with advanced dementia, (3) spiritual needs from health care providers, and (4) addressing spirituality, with the following categories: music, significant activities, among others. CONCLUSIONS: Spirituality is not formally addressed in this population, and professionals do not feel confident enough to be able to integrate spirituality in their care. It is necessary to identify and record the spiritual needs of people with advanced dementia, as well as to design specific care programs.] [This article is available online.]
Connolly, L. and Moss, H. "Music, spirituality and dementia: exploring joint working between pastoral care professionals and music therapists to improve person-centred care for people with dementia." Dementia 20, no. 1 (January 2021): 373-380. [(Abstract:) This paper presents innovative practice in the area of interdisciplinary collaboration between pastoral care and music therapy professionals to meet the spiritual needs of people with dementia in a hospital environment. Our qualitative research identified the following themes to guide future endeavours in this area: Music has the capacity to facilitate spiritual expression; music therapy contributes to validating the individuality of the person with dementia; collaborative work between music therapy and pastoral care is worthy of further exploration. This study is one of few to address the potential for combining pastoral care and music therapy in the care of people with dementia.] [This article is available online.]
Giannouli, V. and Giannoulis, K. "Gazing at Medusa: Alzheimer's dementia through the lenses of spirituality and religion." Health Psychology Research 8, no. 1 (May 27, 2020): 8833 [electronic journal article designation]. [(Abstract:) Although religious and spiritual issues regarding Alzheimer's Dementia (AD) were not thoroughly investigated in the past, this review presents the most recent findings that can provide some scientific evidence about the experience and clinical usage of religious and spiritual beliefs from the perspective of the diagnosed patient, the caregiver-family members, and the health professional. Majority of the papers reviewed (50 out of 51) identified a positive influence of religiousness and spirituality. Thus, this review examines through a detailed analysis the possible pathways of the influence of these perceptions in cognitive, emotional, and behavioral aspects of AD. Findings support the paramount importance of religion and spirituality in coping with the diagnosis of this specific type of dementia. Future experimental research should consider these observed benefits with caution and include them in everyday life.] [This article is available online.]
Khalsa, D. S. and Newberg, A. B. "Spiritual fitness: a new dimension in Alzheimer's disease prevention." Journal of Alzheimer's Disease 80, no. 2 (2021): 505-519. [(Abstract:) BACKGROUND: Religious and spiritual interventions may have an effect on Alzheimer's disease prevention. Kirtan Kriya meditation has been shown to mitigate the deleterious effects of chronic stress on cognition, reverse memory loss, and create psychological and spiritual wellbeing, which may reduce multiple drivers of Alzheimer's disease risk. OBJECTIVE: To detail a new concept in medicine called Spiritual Fitness, a merging of stress reduction, basic wellbeing, and psycho/spiritual wellbeing to prevent Alzheimer's disease. METHODS: The literature on the topics mentioned above is described, including an in-depth discussion on why and how each are critical to advancing the future of Alzheimer's disease prevention. The many negative effects of chronic stress, and the benefits of Kirtan Kriya, are reviewed. The four pillars of basic wellbeing, six practical aspects of psychological wellbeing, and the four new non-sectarian features of spiritual fitness are then disclosed. Moreover, instructions on practicing Kirtan Kriya are offered in the Supplementary Material. CONCLUSION: Religious and spiritual practices, including Kirtan Kriya, are crucial components in the development of enhanced cognition and well-being, which may help prevent and, in some cases, reverse cognitive decline. The key point of this review is that making a commitment to live a brain longevity lifestyle including spiritual fitness is a critically important way for aging Alzheimer's disease free. We hope that this article will inspire scientists, clinicians, and patients to embrace this new concept of spiritual fitness and make it a part of every multidomain program for the prevention of cognitive disability.] [This article is available online.]
McGee, J. S., Myers, D. R., Meraz, R. and Davie, M. "Caring for a family member with early stage Alzheimer's disease: caregiver perceptions, connections, and relational dynamics with the sacred." Journal of Religion, Spirituality and Aging (2021): online ahead of print, 7/10/21. [(Abstract:) Researchers have conceptualized spirituality as the search for or connection with the sacred -- or that which is considered blessed, holy, or revered by each individual. Some perceive the sacred as their relationship with a divinity (e.g., God, gods, Higher Power). Others consider the sacred to be something bigger than themselves (e.g., the Universe, Nature, guiding life philosophy). The self may also be considered sacred by some. The current research suggests that family caregivers of persons with Alzheimer's disease and related dementias (ADRD) with strong connections with the sacred have fewer symptoms of depression, more positive perceptions of the caregiving experience, improved coping, and bolstered resilience. This research, however, does not take into consideration the stage of ADRD that a caregiver's loved one is in, which may be an important factor. In this study, we were interested in learning more about caregivers' conceptualizations of the sacred at the beginning of their caregiving journey. Twenty-seven family caregivers of persons with early-stage ADRD (CDR = 1) were interviewed using the Dimensions of Caregiving Interview (DCI). Thematic Analysis was utilized as our methodology. Findings revealed several themes: 1) There is diversity in conceptualizations of the sacred among caregivers; 2) Caregivers perceive the sacred as having distinct characteristics, traits, and functions; and 3) The nature of the relationship with the sacred can be important to adaptation in the early-stages of the caregiving journey. Recommendations for practice and future research are provided.]
Vespa, A., Fabbietti, P. and Giulietti, M. V. "Study of the effects of mindfulness training on quality of life of patients with Alzheimer's disease and their caregivers (Dyad Mindfulness Project)." Aging-Clinical and Experimental Research 34, no. 1 (January 2022): 65-71. [(Abstract:) BACKGROUND: The training of mindfulness enhances the emotive and cognitive equilibrium and well-being in older adults. So some authors hypothesize it is an appropriate approach to cultivating these benefits and a good quality of life in Alzheimer's patients (AD-P) at early stage and in their caregivers (Cg) (Dyad). AIM: Our main hypothesis is that AD-P and Cg who completed the program of Mindfulness-Based Interventions (MBIs) training would experience improvements in well-being and mood and cognitive performance (AD-P: attention and memory). METHODS: The perspective randomized controlled will enroll the Dyad of 80 Alzheimer's patients (age >= 60) and 80 caregivers (age > 18) who will be randomly assigned to 6 months MBI training in groups and to control group study. All outcome will be analyzed before intervention (baseline), after follow-up 1 (at the end of treatment), after 6 months (follow-up 2) and after 1 year (follow-up 3) from the end of treatment. DISCUSSION: AD-P-expected outcomes: (a) improvement of the quality of life (QoL-AD); (b) decrease of depression (BDI); (c) improvement of spiritual well-being (Facit SWB Index); (d) improvement of attention and good cognitive performance Rey Memory Test (MFIT); (e) decrease of neuropsychiatric symptoms. (NPI)-Cg-expected outcomes: (a) improvement of the quality of life (SF36); (b) decrease of the care burden (CBI); (c) decrease of depression (BDI); (d) improvement of self-awareness (FFMQ); (e) increase in spiritual-well-being (Facit SWB). CONCLUSIONS: This study could provide a clues on multidisciplinary interventions as secondary prevention of Alzheimer's dementia and on stress reduction in family caregivers.]
III. For older articles on spirituality and dementia/Alzheimers, see our June 2007 Article-of-the-Month page.
IV. For more on Dignity Therapy and dementia, see our April 2015 Article-of-the-Month page. Also, see the following recent articles (though only the Johnson et al. 2016 article specifically mentions spirituality):
Aspiras, D. D., Empeno, J. and Montross-Thomas, L. P. "To honor and bear witness: a clinician's reflection on Dignity Therapy for people living with dementia." Journal of Palliative Medicine 22, no. 8 (2019): 1007-1008. [This is a brief personal account that represents the rich nature of this subject for qualitative research/case studies.]
Jenewein, J., Moergeli, H., Meyer-Heim, T., Muijres, P., Bopp-Kistler, I., Chochinov, H. M. and Peng-Keller, S. "Feasibility, acceptability, and preliminary efficacy of Dignity Therapy in patients with early stage dementia and their family. A pilot randomized controlled trial." Frontiers in psychiatry Frontiers Research Foundation (2021): 12:795813 [electronic journal article designation]. [(Abstract:) Purpose: Dementia is the major cause for disability and dependence in older people and associated with considerable psychological burden. The aim of this study was to determine the feasibility, acceptability and preliminary efficacy of Dignity Therapy, a brief psychotherapeutic intervention to enhance dignity and reduce psychological burden, in patients with early stage dementia and in their families or close friends. Materials and methods: In this randomized, waiting list-controlled clinical trial a total of 54 patients with new diagnosis of early stage dementia and 54 study partners (spouses: n = 37; relatives: n = 14; close friends: n = 3) were randomly assigned to immediate treatment (n = 28) or delayed treatment (n = 26) after 3 months waiting. The main outcomes were feasibility: proportion of screened and invited patients who consented participation; Acceptability: number of drop-outs, and satisfaction with treatment; Efficacy: psychological burden (Hospital Anxiety and Depression Scale-HADS), quality of life (WHOQOL-Bref), and sense of dignity (Patient Dignity Inventory-PDI). Results: In total 38.6% of all eligible patients (n = 140) consented and were enrolled. Along the study six participants (11.1%) dropped out. Patients' satisfaction with the treatment was high and with no significant difference between the groups. HADS scores were significantly lower in both groups at the 3-months follow-up (immediate group: mean difference = -2.69, SE = 0.85, P = 0.003; delayed group: mean difference = -1.97, SE = 0.89, P = 0.031). There was no significant group by time interaction effect (F = 0.71; df = 2, 70.3; P = 0.50). PDI scores only decreased significantly (i.e., improvement of dignity) in the immediate group (mean difference = -6.56, SE = 1.63, P < 0.001; delayed group: mean difference = -3.01, SE = 1.69, P = 0.081), but the group by time interaction effect was not statistically significant (F = 2.29; df = 1, 46.8; P = 0.14). Quality of life improved in some respects by the treatment, but the immediate and the delayed group did not differ significantly over time. After pooling patients' data of both groups, Dignity Therapy resulted in significant improvements in almost all outcome measures. Patients' family members/close friends reported high satisfaction with the intervention. Conclusions: Our findings suggest that Dignity Therapy is feasible and highly accepted in patients with early stage dementia. Patients reported significant improvements, however, there was no significant effect of the intervention in the immediate treatment group compared to the delayed group.] [This article is available online.]
Johnston, B., Lawton, S., McCaw, C., Law, E., Murray, J., Gibb, J., Pringle, J., Munro, G. and Rodriguez, C. "Living well with dementia: enhancing dignity and quality of life, using a novel intervention, Dignity Therapy." International Journal of Older People Nursing 11, no. 2 (June 2016): 107-120. [(Abstract:) AIMS AND OBJECTIVES: To assess the feasibility, acceptability and potential effectiveness of Dignity Therapy to improve the quality of life and reduce psychological and spiritual distress in older people with early stage dementia. BACKGROUND: Dementia is a syndrome with several causes that leads to a progressive decline in multiple areas of functioning. The maintenance of dignity and enhancement of quality of life are key elements of care. Meaningful communication may become more difficult with condition progression. Improvements in communication may have positive effects on the person's quality of life. Dignity Therapy is a short psychotherapeutic intervention that uses a trained therapist to take the person with dementia through a guided interview process, producing a 'generativity' document that creates a lasting, written legacy during a time when they are still able to communicate well. DESIGN AND METHOD: This was a feasibility mixed method study. Dignity Therapy was undertaken with patients diagnosed as having early stage dementia. Data were gathered from pre- and post-Dignity Therapy interviews, a focus group, interviews with key stakeholders, and three outcome measures: The Herth Hope Index; The Patient Dignity Inventory; Perceived Quality of Life/Satisfaction with Quality Life Ratings. FINDINGS: This study demonstrated that Dignity Therapy is feasible, acceptable and potentially effective for older people with dementia. Three overarching themes emerged: A life in context, A key to connect and Personal legacy. CONCLUSIONS: We recommend that this feasibility study forms the basis for further study, advocating the prospective benefits to patients with dementia, families and nursing practice. IMPLICATIONS FOR PRACTICE: Dignity Therapy, as a psychosocial intervention, has the potential to improve the quality of life and enhance person centred care for people with dementia.] [A text version of this article is available online from The Queen's Nursing Institute, Scotland.]
Johnston, B., Lawton, S. and Pringle, J. "'This is my story, how I remember it': in-depth analysis of Dignity Therapy documents from a study of Dignity Therapy for people with early stage dementia." Dementia 16, no. 5 (July 2017): 543-555. [(Abstract:) Dementia is a progressive condition that impacts on individuals, families and care professionals. Maintaining quality of life through engagement with the person with dementia is an important part of their care. Dignity Therapy is an interactive, psychotherapeutic intervention that uses a trained dignity therapist to guide the person with dementia through an interview that then creates a written legacy called a generativity document. This can provide knowledge to inform care, as the condition progresses. Generativity documents were analysed using framework analysis. Main themes from the analysis were origin of values, essence and affirmation of self, forgiveness and resolution and existentialism/ meaning of life. These themes provide evidence of the type, scope and contribution that information generated from Dignity Therapy can make to the care and support of people with dementia. They provide information about the values, self-identity and the people and events that have been important to them and influenced their lives.]
V. Our article highlights the Preserving Identity & Planning for Advance Care (PIPAC) intervention -- developed by co-author Michelle M. Hilgeman -- as a non-spiritual model that might be broadened to address spiritual needs. This model has been published (below), but the its original presentation may be found in Hilgeman's 2010 dissertation, available from the University of Alabama [--see pp. 47-48 for a concise description of the procedure for the intervention].
Hilgeman, M. M., Allen, R. S., Snow, A. L., Durkin, D. W., DeCoster, J. and Burgio, L. D. "Preserving Identity and Planning for Advance Care (PIPAC): preliminary outcomes from a patient-centered intervention for individuals with mild dementia." Aging and Mental Health 18, no. 4 (May 2014): 411-424. [(Abstract:) OBJECTIVES: The purpose of this pilot study was to conduct limited-efficacy testing of the newly developed Preserving Identity and Planning for Advance Care (PIPAC) intervention on self-reported and proxy-reported emotional and health-related outcomes of individuals in the early stages of dementia. METHOD: A two-group comparison design was implemented. Blocked randomization was used to assign individuals with mild dementia and a family contact to either (1) the four-session, multi-component intervention group focused on reminiscence and future planning or (2) the minimal support phone contact comparison group. Of the 19 enrolled dyads, 18 completed post-treatment assessments (i.e. 10 intervention and 8 comparison group). Individuals with dementia were M=82.8 (SD=6.46) years old; 31.6% were men and 68.4% were women. Participants were predominantly white/Caucasian (n=18, 94.7%) with one black/African-American (5.3%). RESULTS: Analyses of covariance controlling for baseline differences revealed clinically meaningful differences (with medium to large effect sizes) between groups at post-treatment for depressive symptoms, quality of life, health-related quality of life indicators, and decisional conflict. Individuals in the intervention group were also observed to exhibit higher levels of coping. Feasibility data collected from participants and interventionists were encouraging. CONCLUSION: Emotion-focused, patient-centered interventions like PIPAC hold promise for advancing treatment options in the early and mild stages of dementia. A full-scale, randomized clinical trial of this intervention is warranted to determine both short-term and long-term impacts on clinical outcomes including improved depressive symptomatology, quality of life, and health-related factors that impact daily functioning in social environments.]
VI. Readers may be interested to view a 30-minute lecture by John Swinton, Chair of Divinity and Religious Studies at the University of Aberdeen, Scotland, delivered in 2015 as part of the Initiative on Health, Religion, and Spirituality at Harvard University: "Spirituality and Dementia: Living in the Memories of God," available on YouTube. He has been a significant contributor to the spirituality & health literature. See his university page.
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