How to provide existential and spiritual support to people with mild to moderate dementia and their loved ones. A pilot study.

BACKGROUND: People with mild to moderate dementia and their loved ones may experience strong existential and spiritual challenges due to the disease. People with dementia could therefore benefit greatly from ongoing conversational support. Within the literature and in supportive practice, there are very few tools that help professionals provide this type of support. Professionals may therefore be unaware of, or uncertain of, how support can be given. OBJECTIVE: To develop and test support approaches that may enable professionals to better conduct conversations with attention for existential and spiritual issues. METHODS: Participatory action research was conducted with dementia care professionals who spoke to 62 clients and 36 loved ones. Research consisted of two cycles of analyzing support, formulating strategies to try, testing and reflecting on the success of these actions and formulating new ones. The Diamond model for existential and spiritual issues regarding mild to moderate dementia, developed in previous research, was used as a framework. RESULTS: Five types of approaches, corresponding to the five fundamental polarities within the basic framework, were found to be helpful in alleviating tensions and bolstering strengths. For issues of self-confidence and -worth, an approach of exploring the felt self was developed; for issues of capacity and adaptability, an exploring daily routines approach; for issues of security and loss, an exploring a trinity of needs approach; for issues of burden and enrichment, an exploring memory approach; and for issues of faith and meaning, an exploring ones' predicament approach. When exploring these approaches, participants found sets and sequencing of questions and prompts to be helpful and transformative. CONCLUSION: Professionals can use the Diamond framework to provide conversational support to alleviate tension, enhance meaning and bolster strength for clients and loved ones.

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

BACKGROUND: People with early-stage dementia could benefit greatly from on-going spiritual support. However, health care professionals working in dementia care often do not have a clear idea of what such support might entail. There is a lack of tools that can help professionals provide such support. The Diamond conversation model used in palliative care could provide such a support. Aims: To develop the Diamond model for early-stage dementia so that professionals can provide better spiritual support. METHODS: Participatory research was conducted. Reflective interviews with chaplains, case managers and health psychologists identified frequently occurring existential and spiritual issues of clients and family members. A core participatory group consisting of chaplains, a psychologist and a researcher further analysed these issues thematically and co-developed the Diamond model for early stage dementia over three co-creation sessions. Researchers with Diamond model expertise provided feedback to the core participatory group in between these sessions based on the session output. FINDINGS: Central existential and spiritual issues were found to be: self-confidence and -worth, adaptability and capacity, security and loss, burden and enrichment of memory and faith and meaning. The five polarities of the Diamond model were found helpful to understand tensions surrounding these issues. Specific tensions were identified between maintaining a self and being valued, finding direction in what to do and a way to bear changes in ability, a strong need for attachment and letting go of past ways to relate to one another, the renewed intensity of long term memories and decline of the short term ones and surrendering to one's life situation and wanting certainty and meaning. CONCLUSIONS: The newly developed Diamond model for people with early-stage dementia offers a valuable framework to help professionals provide conversational support. More research needs to be done to further test and develop the model in practice.

Spiritual conversation model for patients and loved ones in palliative care: a validation study.

OBJECTIVES: In palliative care, validated tools for professionals that facilitate day-to-day spiritual conversations with patients and loved ones are scarce. The objective of this study was to validate the Diamond spiritual conversation model across different palliative care settings as well as professional and educational levels. METHODS: An online survey was filled in by 387 professionals providing palliative care for patients in hospice, home care, hospital and nursing home settings. The five polarities of the Diamond model: holding on-letting go, doing-undergoing, remembering-forgetting, me-the other and believing-knowing were operationalised and evaluated on reported occurrence. RESULTS: In conversations with patients, palliative care professionals reported letting go of loved ones (81.8%), dealing with pain and suffering (88.1%), dealing with issues from the past (67.2%), dealing with own versus loved one's wishes (69.4%) and giving meaning to death (66.7%) as themes occurring regularly to very often. In conversations with loved ones, this was 70.8%, 78.5%, 55.4%, 68,8% and 62%, respectively. Respondents working in hospices reported these themes significantly more than those working in home care settings, nursing homes or hospitals. Nurse assistant respondents reported the themes significantly less than nurses or chaplains. CONCLUSION: From the perspective of professionals providing palliative care in different palliative care settings, the Diamond model offers a validated framework for addressing relevant spiritual themes for patients and loved ones.

How can existential or spiritual strengths be fostered in palliative care? An interpretative synthesis of recent literature.

BACKGROUND: Patients receiving palliative care may benefit greatly when their existential or spiritual strengths are fostered. To date however, there has not been a comprehensive literature review of patient and care professional approaches that are available. AIMS: To describe and synthesise existential or spiritual strength-based approaches within the context of palliative care. METHODS: Literature search of 2436 articles between January 1999 and March 2019 in Scopus, Web of Science, CINAHL and PsycINFO. Articles were included if they deal with a palliative care situation, focus on the patient, specific existential/spiritual strength, discernible strength approach and an analysis of the workings of that approach. The interpretative synthesis consisted of a thematic analysis of the included articles and an integration of themes. RESULTS: In the 14 included articles, 5 different strengths were found to be fostered by 16 approaches: (1) Meaning was fostered by: maintaining normalcy, experiencing sanctuaries, reassessing importance and reconstructing positive self; (2) Connection by: opening up, giving/receiving care and envisioning continuation; (3) Agency by: maintaining control, refocusing goals and continuous adaptation; (4) Hope through: setting special targets, imagining alternate outcomes, building a collection and extending wishes; (5) Faith through: living the tradition and relating to a benevolent force. Strengths and approaches are visualised in an overarching analytical framework: 'the Propeller'. CONCLUSIONS: The constructed Propeller framework can be used to become aware of, apply and further develop approaches to foster existential or spiritual strengths among patients receiving palliative care.

Matching gerontechnologies to independent-living seniors' individual needs: development of the GTM tool.

BACKGROUND: Most seniors wish to live independently for as long as possible. Gerontechnologies such as personal alarms or remote control systems, have the potential to help them age in place. For seniors, assessing what is the most appropriate technology for their aging in place needs can be difficult. Professionals specifically tasked with matching seniors' needs with technology solutions can greatly help here. Yet not much is known about the challenges these professionals face or how they can optimize their matchmaking service. METHODS: Participatory action research was conducted in the Netherlands, in two phases. In phase one, ten matchmaking dialogues between municipal technology consultants and seniors were observed, followed by interviews with both technology consultants and seniors to understand the current matchmaking service. In phase two, a new matchmaking tool was co-created with technology consultants and other professionals over the course of four co-creation session. Variants of the tool were tested out in nine additional matchmaking dialogues. The Cycle of Technology Acquirement by Independent-Living Seniors (C-TAILS) model, which can be used to understand both origins and consequences of technology acquirement by independent-living seniors, was used as a theoretical lens. RESULTS: Important challenges for municipal technology consultants in their current matchmaking practice are: making the matchmaking service more demand oriented and creating an accurate and complete overview of relevant factors within the seniors' individual situation so that an optimal match can be made. Together with technology consultants and other professionals, a new Gerontechnologies Matchmaking (GTM) tool was created to help overcome these challenges. Evaluation of the tool showed that it better includes each senior's personal, social, physical and technological context, within the matchmaking service. CONCLUSION: Professionals who help seniors match gerontechnology to their aging in place needs experience a variety of challenges in the delivery of their service. Currently, few tools are available for them to overcome these challenges. The newly developed GTM tool can help overcome challenges and optimize matchmaking services. Further testing of the tool in different contexts is needed to determine its generalizability.

Rational decision-making about treatment and care in dementia: a contradiction in terms?

OBJECTIVE: To gain caregivers' insights into the decision-making process in dementia patients with regard to treatment and care. METHODS: Four focus group interviews (n=29). RESULTS: The decision-making process consists of three elementary components: (1) identifying an individual's needs; (2) exploring options; and (3) making a choice. The most important phase is the exploration phase as it is crucial for the acceptance of the disease. Furthermore, the decision is experienced more as an emotional choice than a rational one. It is influenced by personal preferences whereas practical aspects do not seem to play a substantial role. CONCLUSION: Several aspects make decision-making in dementia different from decision-making in the context of other chronic diseases: (1) the difficulty accepting dementia; (2) the progressive nature of dementia; (3) patient's reliance on surrogate decision-making; and (4) strong emotions. Due to these aspects, the decision-making process is very time-consuming, especially the crucial exploration phase. PRACTICE IMPLICATIONS: A more active role is required of both the caregiver and the health care professional especially in the exploration phase, enabling easier acceptance and adjustment to the disease. Acceptance is an important condition for reducing anxiety and resistance to care that may offer significant benefits in the future.