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. Author manuscript; available in PMC: 2026 Sep 30.
Published before final editing as: J Aging Soc Policy. 2026 Sep 12:1–19. doi: 10.1080/08959420.2026.2729026

Embracing the DIGNITY of Resident Relationships: A Case Study of the Decision-Making in Aging and Dementia for Autonomy (DIGNITY) Protocol

Liza Behrens a, Karolus Wangi a, Caroline Madrigal b, Mary Lou Ciolfi c, Joanne Roman Jones d, Susan Ryan e, Nicole Osevala f, Betsy Kemeny g, Allison Myers h, Nicole Sarver h
PMCID: PMC13622978  NIHMSID: NIHMS2211759  PMID: 42728820

Abstract

Public policies governing U.S. nursing homes emphasize resident rights, autonomy, and person-centered care, yet translating these principles into everyday practice remains challenging – particularly for residents living with dementia whose preferences involve perceived risk. Regulatory requirements, liability concerns, and inconsistent interpretations of decision-making capacity often constrain staff ability to honor resident choice. This case study examines the application of the Decision-making in Aging and Dementia for Autonomy (DIGNITY) protocol, a structured, evidence-based framework designed to support shared decision-making within regulated long-term care environments. Using a resident-to-resident relationship preference as an illustrative case, the study demonstrates how the DIGNITY protocol guides interdisciplinary decision-making through systematic preference assessment, decision-specific capacity evaluation, risk-benefit analysis, documentation, family engagement, and collaboration with organizational leadership and regulators. The case highlights policy-relevant challenges, including the inappropriate reliance on cognitive screening tools such as the Brief Interview for Mental Status (BIMS) as proxies for decision-making capacity. Findings underscore the importance of clear organizational policies, staff training, and leadership engagement to align person-centered care with regulatory expectations. This case study illustrates how structured decision-making protocols can operationalize resident rights, support autonomy, and mitigate risk, offering a practical model for policy implementation in nursing home dementia care.

Keywords: Decision-making capacity, dementia, nursing homes, person-centered care, resident autonomy, risk management, safety, shared decision-making

Introduction

Older adults living with dementia are routinely excluded from health care decision-making worldwide (Alzheimer’s Disease International, 2025). Residential care settings, such as nursing homes (NHs), reflect broader societal norms and often reproduce ableist assumptions that limit opportunities for participation in everyday care decisions. These dynamics may be especially pronounced in government-funded NHs, where institutional constraints, staffing limitations, and regulatory oversight can unintentionally deprioritize resident autonomy.

These older adult residents are at risk of having their legal rights violated, including their right to self-determination, to be treated with dignity and respect, and to be provided with care that aligns with their preferences for everyday living and care (Centers for Medicare & Medicaid Services, n.d.; Mukamel et al., 2023). The balance between residents’ rights, competence, capacity, and consent for individual choice in person-centered dementia care involves many varied considerations that if ill-handled, may result in tensions that negatively impact a resident’s quality of life. Notably, plans of care may or may not be updated to reflect a resident’s personal preferences, and if the preferences concern “risky” decisions may lead to increased expression of behavioral and psychological symptoms of distress (National Academies of Sciences, Engineering, and Medicine, 2022). Additionally, without guiding laws and policies at the national, state, and local levels different stakeholders, all invested in the care of the residents, may approach this issue differently, including stakeholders from the realms of medicine, law, nursing, administration, or family/loved ones.

Without this guidance, it is necessary to untangle the complex legal language for stakeholders surrounding everyday health care decision-making related to dementia care (e.g., choosing when and how to bathe, what to eat, or what activities to take part in). Competency or competence is a legal term indicating that an individual has the mental ability to participate in different legal tasks, including contract negotiation, creating a will, or standing trial. Conversely, incompetence is a legal determination indicating that a person should be prevented from engaging in certain actions because of an individual’s lack of ability (Doyle & Sollins, 2023). Capacity is a clinical determination that an individual can understand, make, and take responsibility for the consequences of decisions relating to healthcare. In other words, when a person has decision-making capacity, they can understand, appreciate, and reason about the risk, benefits, consequences and alternatives to their preference or choice (Doyle & Sollins, 2023). Decisional capacity, including the criteria of understanding, choice expression, appreciation, and reason, also involves healthcare decision making. Capacity exists on a continuum (as opposed to zero/sum), can change over time, and is decision specific (not global). Importantly, mild cognitive impairment or dementia diagnoses do not necessarily proscribe decision-making capacity (Roman Jones & Morgan, 2025).

Several countries have successfully adopted laws to support decision-making in dementia care including Ireland, Scotland, and some Latin American countries. Other counties use hybrid models that both support decision-making but also have statutes that substitute decision-making including the United Kingdom (England/Wales), Canada, and Australia. Other countries have taken a policy-driven approach rather than legal reform approaches including Japan and Nordic countries (Kim et al., 2026). Here in the United States, there is growth in state-based laws that require supported decision-making; however, this is not adopted nationwide (American Bar Association Commission on Law and Aging, 2019).

To address the complex issue of including older adults living with dementia in everyday health care decision-making, the Decision-making In aGing aNd dementIa for auTonomY (DIGNITY) intervention was created. DIGNITY is a multi-component, evidence- and theory-based educational intervention for shared decision-making that is designed to help NH staff safely honor the preferences of residents living with dementia while managing associated health and safety risks often associated with cognitive decline (L. L. Behrens et al., 2026). Recently pilot tested [NCT05618678] this staff-led intervention was considered feasible, appropriate, and acceptable for NH staff aiming to balance autonomy with safety in dementia care (L. Behrens & Boltz, 2025). NH staff described the DIGNITY program as relevant and compatible for addressing resident risks associated with honoring their high-risk preferences but also emphasized that it minimizes the shared risk the facility has including regulatory and financial risks. In this paper, we describe a real case scenario regarding a common “risky” preference in the NH setting, with resident names changed for privacy. We apply the components of the DIGNITY protocol (depicted in Figure 1) to illustrate its usefulness in assessing capacity, supporting autonomy, and developing a plan for residents and staff in routine social preference that has legal implications.

Figure 1.

Figure 1.

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DIGNITY protocol components. Note. The DIGNITY protocol operates within an organizational framework that establishes clear expectations for dignity-of-risk engagement through leadership support, standard operating procedures, and regulatory alignment prior to frontline implementation.

Case study

Jack is a 79-year-old male living in a rural Pennsylvania memory care unit. He was admitted in April of 2023 from another NH community where he eloped. Jack has a diagnosis of vascular dementia of unspecified severity and behavioral disturbances. His dementia presents with short-term memory loss, executive dysfunction, and mood lability. Since admission to the memory care unit, Jack has had a history of elopement attempts and refusing care, that have resulted in three falls due to tripping in hasty exit attempts. Jack’s medical chart indicates that he has had BIMS scores ranging from 1–11 since admission, indicating fluctuations between moderate to severe cognitive impairments. Psychiatric Services evaluate Jack monthly. Jack expresses a strong preference for companionship, specifically with another resident, Diane (e.g., handholding, kissing, and co-sleeping). Jack is legally married; his wife is cognitively intact and makes health care decisions for Jack per state law. However, Jack’s son is power of attorney (POA) and Jack’s wife often defers decisions to the son.

Diane is an 89-year-old female living in the same memory care unit as Jack. Diane has a dementia diagnosis of Alzheimer’s Disease with Early Onset and was admitted in January of the same year as Jack, by her daughter. Diane’s daughter, who is POA for health care decisions, was concerned for her safety as Diane would often walk around town without supervision. Diane is followed by Psychiatric Services monthly. Upon cognitive assessment, her BIMS score has been stable since admission at three, indicating severe cognitive impairment. Diane is legally married and received all her care prior to admission from her husband. Diane’s daughter does not defer health care decision making authority to Diane’s husband, even though he is cognitively intact. Diane also expresses a desire for companionship with Jack. Diane shows interest in Jack, they hold hands, kiss, and co-sleep. Diane’s husband generally does not want Diane to spend time with others, especially with Jack. To address this situation, the care team has opted to enact the DIGNITY protocol.

Application of the DIGNITY protocol

Component 1: assess and track preferences

The DIGNITY Protocol suggests several key tasks within this component including conducting a preference assessment, engaging the resident’s family or close friends in the preference assessment, and identifying the “risky” preference (L. L. Behrens et al., 2026). In line with these suggestions, Jack’s care team, including the memory unit manager, care plan coordinator, nursing staff, and NH administrator, identified Jack’s preference for companionship with Diane through observed behaviors and verbal expressions of Jack. The care team documented Jack’s preference for companionship, including handholding, kissing, and co-sleeping with Diane in the clinical progress notes. The care team then informally interviewed Jack and his POA to better understand the relational significance of his preference. During this time, Jack’s POA indicated that his father had previously engaged in extramarital relationships. The care team considered this relationship preference to be “risky” due to cognitive impairments of both residents, marital status, potential family conflict, and the display of physical intimacy in a shared care setting. Thus, the care team informed both POAs of the situation, who gave conditional consent for the platonic relationship.

Component 2: assess and care plan for risks and benefits

The DIGNITY Protocol suggests several key tasks within this component including reviewing the resident’s chart for preference history and medical, psychosocial, and functional history related to the preference; clarifying the resident’s preference and assessing the resident’s decision-making capacity using the DIGNITY Decision-Making Capacity Assessment Tool; assessing health and safety risks and benefits guided by the DIGNITY Risks and Impacts Worksheet; and communicating amongst the care givers by participating in a scheduled interdisciplinary care planning meeting with the resident and their POA present (see Supplemental Material) (L. L. Behrens et al., 2026).

At this stage of the process, the care team including the psychiatric physician, social worker, and nursing staff, evaluated Jack’s decision-making capacity to assess his ability to understand the nature of his preference, appreciating the potential risks of family conflict and emotional distress, reasoning with Jack through alternatives such as supervised companionship, and his ability to consistently express his choice. The care team evaluated Jack’s decision-making capacity on two separate occasions to account for his cognitive fluctuations. Due to the dyadic nature of this relationship preference, the care team also evaluated Diane’s decision-making capacity in the same fashion. Both residents were deemed capable of making the decision to have a relationship at the time of the evaluations. Additionally, at the same point, the care team recognized that there are currently no court or physician orders deeming either resident as incompetent. Therefore, legally, neither resident should be prevented from engaging in certain actions because of their lack of competence.

The care team also reviewed Jack’s clinical chart for additional information that could impact decision-making around honoring Jack’s relationship preference. Physically, Jack was very mobile and well-groomed; however, he did experience occasional bladder incontinence. His primary medical diagnoses were benign prostatic hyperplasia with urinary tract infections, primary hypertension, and hyperlipidemia. He has a psychosocial history including major depressive symptoms with severe psychotic symptoms, alcohol dependence, and non-traumatic intracerebral hemorrhage. Psychiatric Services evaluate him monthly. Jack’s BIMS score was six at the time of the chart review, indicating severe cognitive impairment. He was oriented to person and month, but his memory was generally poor. He had documented behavioral patterns for exit seeking, refusing care and medications, verbal frustrations, using incorrect beds/bathrooms, and sleeping in the nude or going shirtless throughout the day. Jack was taking the following medications daily: Paxil 40 milligrams (mg); Hydrochlorothiazide 25 mg; Lisinopril 20 mg; and Atorvastatin 20 mg. Again, due to the dyadic nature of this relationship preference, the care team reviewed Diane’s physical and psychosocial histories as well. Generally, Diane was described as very mobile and well-groomed. She had no history of falls. Diane was a homemaker and had two daughters and a son from a previous marriage. Other than dementia, Diane had a history of depression but no other medical issues. Her only medication was Memantine 10 mg twice daily. Diane had a social personality and desired companionship regularly.

Simultaneously, and while keeping critical patient privacy rules in mind, the care team scheduled separate interdisciplinary care planning (IDCP) meetings involving each resident with their POA, along with relevant care team members. During each meeting, the group discussed the potential risks, benefits, and impacts of continuing to honor Jack and Diane’s preference for companionship that included handholding, kissing, and co-sleeping. It became clear to the care team during these meetings that Diane equally desired to have a relationship with Jack and that neither of them indicated a similar level of interest in other residents. Guided by the DIGNITY Risks and Impacts Worksheet, the care team, POA, and residents identified and discussed the potential impacts of the risks and benefits of honoring this preference (Supplemental Material). Potential benefits or positive outcomes of honoring the preference were discussed for Jack, Diane, and for the staff and community. For Jack, several positive outcomes included the potential to improve his emotional well-being, reduce his behavioral symptoms, increase his sense of autonomy and dignity by having his choice respected, and improve his quality of life with enhanced social connection and meeting emotional needs. The care team anticipated that Diane may experience similar positive outcomes by meeting her needs for companionship and social stimulation. Also considered were potential positive outcomes for the staff and community, including improvements in resident-staff relationships and more positive care interactions.

The care team discussed several potential risks and harms. For Jack and Diane, this included a risk for falls or injury related to co-sleeping in the same small bed, emotional distress should the platonic relationship boundaries be crossed or if one resident becomes uncomfortable with the relationship, increased cognitive confusion if one the residents misinterprets the relationship or its implications due to dementia, and family conflict should the spouse of the resident object – which was already a concern for Diane’s spouse. The care team identified several potential risks for the organization and staff including risk of regulatory citations should the policies related to the residents’ relationships be unclear or violated in any way, legal liability if harms did occur and documentation and consent were insufficient, and emotional burden to staff negotiating the complex ethical and interpersonal dynamics of this preference situation.

Following both IDCP discussions and after engaging with decision aids, the care team identified a moderate risk of harm to the residents with a moderate potential for positively impacting the residents should they support honoring Jack (and Diane’s) relationship preference. This sets the stage for the next element in the DIGNITY process.

Component 3: determine impact on quality of life

The DIGNITY Protocol suggests two key tasks to determine the impact of honoring a resident’s preference on their quality of life. These tasks include reviewing the personal risk portfolio (Figure 2) to determine the impact of honoring the risky preference on the resident’s quality of life and developing risk mitigation strategies (L. L. Behrens et al., 2026).

Figure 2.

Figure 2.

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Personal risk portfolio. Note. This figure presents a decision-making matrix for balancing quality of life and risk of harm to the resident in nursing home care. The vertical axis represents the contribution to quality of life (high, medium, low), and the horizontal axis represents the risk of harm to the resident (high, medium, low). Each cell provides recommended actions: for example, when quality of life is high and risk is high, the guidance is to maximize safety through enhancement and risk management; when quality of life is low and risk is high, the recommendation is not to allow the activity and seek alternatives. Other cells suggest strategies such as carefully balancing safety and activity management, substituting activities, or allowing the activity when risk is low and quality of life contribution is low.

Reflecting on all information collected to understand the complex circumstances surrounding Jack’s relationship preference, the care plan team referenced the Personal Risk Portfolio adapted for use in the NH setting (L. L. Behrens et al., 2026). The care team plotted their own perceived risk for harm to Jack and Diane as “medium” on the X axis, and their perceived contribution to quality of life for the residents on the Y axis as “medium.” The meeting point of the two plotted points resulted in the recommendation to cautiously consider honoring relationship preference, carefully balancing autonomy with risk. The care team, POA, and residents agreed to move forward with the decision to cautiously honor Jack’s companionship preference with safeguards in place to protect both residents, the staff, and the organization.

Risk mitigation strategies were put into place including routine monitoring and supervision of the relationship, behavioral interventions, environmental modifications, staff education, and enhanced communication and organizational safety measures. NH staff made a point to check the status of Jack and Diane’s relationship daily, encouraging visits in supervised areas of the unit to ensure safety and agreed upon appropriateness of behavior. The NH installed silent door alarms on both residents’ bedroom doors to notify staff of the entrance and exit of the residents. Staff attempted behavioral redirection to separate sleeping arrangements; if redirection was unsuccessful, staff implemented 15-min safety checks during co-sleeping. Staff were provided education on the plan related to honoring the preference. In addition, enhanced communication strategies were implemented to keep the local ombudsperson and both POAs aware of the situation and relationship status. Finally, the organization sought counsel from both the state department of health and the local area agency on aging to ensure the organization was in alignment with regulatory requirements.

Component 4: documentation

The DIGNITY Protocol (L. L. Behrens et al., 2026) provides several steps to document the DIGNITY decision-making process and provides an evidence-based template to document the information related to the stated preference, the possible health/safety risks and benefits of associated with the honoring of the preference, the final determination on how to move forward with the stated preference, and the plan to monitor and review the risk mitigation strategy. The care plan documentation of Jack’s preference is shown in Figure 3. The care plan explicitly identifies Jack’s preference, the plan to monitor, and the plan to review the risk mitigation strategy as discussed above. Jack’s daily care providers made progress notes in the health care record on discussions related to the health and safety risks and benefits and determination of how to move forward with Jack’s preference.

Figure 3.

Figure 3.

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Care plan documentation. Note. This figure presents an individualized care plan table outlining the resident’s preference, safety goal, and corresponding interventions with assigned staff roles. The focus column identifies the resident’s preference for friendship involving physical closeness. The goal emphasizes maintaining safety and supporting decision-making capacity regarding relationships. The interventions/tasks include strategies such as keeping residents in public spaces when possible, confirming consent, conducting capacity assessments with the interdisciplinary team, performing frequent checks, monitoring interactions in common areas, and installing a motion monitor on the door. Each intervention lists the responsible positions (e.g., RN, LPN, NA, SW, ADM) and initiation dates to ensure accountability and timely implementation. Abbreviations as follows: RN = Registered Nurse; LPN = Licensed Practical Nurse; NA = Nursing Assistant; SW = Social Worker; ADM = Administrator.

Component 5: engaging residents and families

The Dignity Protocol (L. L. Behrens et al., 2026) provides several suggestions and tips for NH staff to effectively engage residents and family members in the risk mitigation processes. In the case of Jack’s preference, Jack and his family were involved in discussions and decisions on how to manage the risks associated with his companionship preference. NH leadership suggested this was key to securing support from both Jack and Diane’s POAs. Additionally, the protocol suggests that NH staff should follow up and conduct a preference satisfaction interview with both residents and report the satisfaction interview to family and care supervisors. In this case, Jack’s preference for companionship did not change. However, about 3 months after the start of the preference allowance, Diane’s preference did change, and she was no longer comfortable with Jack’s companionship. Reassessments of Jack’s cognitive status and behavioral symptoms indicated a decline. He was more confused and displayed more agitation. Jack became jealous when Diane spent time with other residents, often triggering agitation with aggressive behavior. Staff found it increasingly difficult to redirect Jack. This change was discussed with Jack and Diane’s families, and it was determined by the IDCP team and the families that the residents should be physically separated for both physical and emotional safety. Due to Jack’s wandering risks, it was agreed that he would stay on the same unit that had secured (locked) doorways. Diane was relocated one floor away to a newly renovated rehabilitation floor where she lived out the remainder of her stay at the nursing home.

Component 6: working with organizational leadership and regulators

The DIGNITY Protocol (L. L. Behrens et al., 2026) suggests working closely with organizational leadership and regulators to align care practices with organizational policies and regulatory standards. As noted earlier, regarding the situation of Jack’s companionship preference, direct care staff worked closely with NH leadership and regulators to align care with practice standards and regulations. The NH administrator and chief executive officer both participated in the DIGNITY pilot study training and coaching sessions. Within this process and while simultaneously negotiating Jack’s companionship preference, these two leaders took several steps to integrate the DIGNITY protocol into organizational practices. First, the leaders revised the admission process to better identify potentially risky preferences from the outset with in-depth preference assessments and conversations with family members. Second, leadership implemented daily clinical rounds on care floors to gather input from frontline staff and to observe resident engagement. Third, leadership holds weekly risk meetings to flag cases or situations requiring review through the DIGNITY process. Lastly, the leadership added DIGNITY related items as standing agenda topics to the organizational risk management meetings to ensure continuous attention and accountability to the process.

Discussion

In this paper we have addressed a real-life clinical scenario involving a “risky” preference (i.e., the companionship of Jack and Diane, nursing home residents living with dementia) using the DIGNITY protocol. Shared-decision making strategies implemented in NHs predominantly support significant end-of-life decisions for people with dementia and are not generally useful for navigating the daily living choices of residents (Daly et al., 2018; Ervin et al., 2017). Unlike previous shared decision-making strategies, DIGNITY is designed to prioritize residents’ preferences for everyday living and their legal rights for self-determination, dignity, and respect, in spite of cognitive challenges posed by changing cognition or a dementia diagnosis. This protocol has been found to be feasible, appropriate, and acceptable to implement by frontline nursing home staff and leaders (L. Behrens & Boltz, 2025).

Resident choice in nursing homes

The DIGNITY protocol is well positioned to equip NH staff to support resident autonomy by facilitating choice-making while simultaneously working to mitigate safety risks. Recognizing, maintaining, or restoring choice for nursing home residents involves a complex interplay of concepts foundational to meaningful choice. Several issues are particularly instructive to the larger NH community and may impact the wider, essential conversations about risk, resident personal preferences, and “risky” decision making that will ensure the delivery of meaningful person-centered care. The outsized impact of the COVID-19 pandemic on older adults living in nursing homes and the alarm it generated among residents and families, long-term care sector experts, and policymakers (Degenholtz et al., 2023) led to the convening of national experts and the subsequent publication of the National Academies of Science, Engineering, and Medicine’s (NASEM) 2022 report, The National Imperative to Improve Nursing Home Quality: Honoring Our Commitment to Residents, Families, and Staff. While broad in scope and recommendations, a fundamental premise of improved quality of care emphasized repeatedly in the report is the attention to and respect for resident choice and autonomy and the need to better understand and deliver care that honors autonomy and safety as essential components of quality of life (NASEM, 2022). Using Maslow’s Hierarchy of Needs as a foundational framework, the NASEM report (2022) identifies – as a strategic imperative – creating a NH environment that supports the human need for self-esteem, physical, and emotional safety, all of which include having meaningful choice in daily care and services for all residents, including those with cognition change.

Self-esteem is a multidimensional concept that includes integrity, autonomy, and inclusion (Johs-Artisensi & Hansen, 2022). Autonomy – “the ability to act autonomously in meeting needs for dependence as well as independence” (Liu & Kao, 2020, p. 2) – is often constrained in the structured environments typical of nursing homes. Research has long shown that loss of choice among residents reduces quality of life (Kane, 2003). The NASEM (2022) report echoes this, noting frequent complaints about limited choice and autonomy, underscoring the challenge of honoring resident autonomy when safety concerns arise. Addressing unmet needs for choice and autonomy may require rethinking quality indicators to include support for identifying and implementing daily living preferences – even those involving risk.

Dignity in nursing homes

Autonomy and personal choice are associated with human dignity and the recognition by others that we have inherent value and worth (Dong et al., 2021), a basic human right (Ibrahim & Davis, 2013). Feelings surrounding the loss of dignity are associated with the lack of attention to, and the honoring of, resident choice and preference and, regrettably, generate psychosocial harms and feelings of anger and frustration among NH residents (L. L. Behrens et al., 2022) that can have deep and lasting impact. It is not uncommon that an older adult may perceive an imbalance of power to their detriment, resulting from the relationship between older adults and other individuals, because of circumstances such as illnesses, getting confused, and needing assistance. In these types of situations, older adults may feel that their dignity is threatened (Torossian, 2021). The frustration of being denied choice is often further compounded when nursing home staff interact with residents in ways that are infantilizing (Shaw & Gordon, 2021) and presume a lack of awareness of risk. Given the highly regulated, overprotective, and restrictive nursing home environment, the ability to make choices that involve risk is often unavailable. However, caring for older people in nursing home settings requires that autonomy be considered as an essential concept to improve the quality of life of older adults (Sunzi et al., 2023). Employing the DIGNITY protocol presented in this paper is a first step toward addressing this gap in the practice setting – providing guidance and tools to empower staff and resident/family collaboration to honor resident preferences and maintain their autonomy.

Decision-making capacity or legal competency?

In this case study, we identified the frequent use of the Brief Interview for Mental Status (BIMS) by NH staff as a way to evaluate and indicate decision-making capacity of the residents. In federally regulated U.S. NHs, the BIMs is a required component of the Minimum Data Set 3.0 assessments conducted upon admission and then at least annually or upon significant changes in mental status (Centers for Medicare & Medicaid Services, 2025). BIMS was developed to screen for basic cognitive impairments in orientation and short-term memory not to assess decision-making abilities required for legal determinations (Li et al., 2022; Tori et al., 2020). BIMs does not evaluate executive functioning, judgment, risk-benefit reasoning, or appreciation of consequences that are needed for legal competency (Tori et al., 2020). Exemplified in this case study the BIMS has a ceiling effect where 40% of NH residents answer all questions correctly indicating they are cognitively intact, when indeed their clinical manifestation indicates otherwise (Li et al., 2022). Furthermore, 20% of residents living with dementia cannot complete a BIMS assessment indicating a need for different cognitive screening procedures (Li et al., 2022). Bottom line, use of BIMS as a proxy for legal competency may undermine supported decision-making and conflict with modern guardianship standards (Sabatino & Wood, 2018).

Practice recommendations

Supporting residents’ preferences, especially those that involve perceived risk, requires an interdisciplinary, “whole team” approach that integrates, not exclusively, residents, family members, POAs, administrative leadership, medical, nursing, recreation, and facility operations staff. Administrators play a key role in developing and refining organizational-level policies regarding capacity and risk assessment. Consequently, it is essential to establish formal pathways for administration participation in care planning conversations where the trade-offs between resident autonomy and potential risk are discussed. There is also a need for clarity in defining the roles of NH staff within the DIGNITY protocol. This includes not only the initial assessment, but also the ongoing monitoring of a resident’s preference after a decision is implemented, as preferences are dynamic and can change overtime (Heid et al., 2016).

Role clarity is important at every level. Nursing assistants are key collaborators who operationalize the care plan – as evident in the case scenario – they supervised resident visits, encouraged residents to appropriate actions or areas, monitored door alarms, and performed consistent rounding. Nurses take a coordinating role, responsible for gathering staff, resident, and family input on the appropriateness of a resident’s preference, educating the team on the rationale and plan for the decision, and integrating these elements into the resident’s plan of care. Nurses can help triage risky preferences as they arise either organically or more formally during preference assessments on intake/over time. If a nursing home is facing a variety of risky preferences from residents, a risk management ad hoc or weekly meeting might be useful to map out an approach to the different types of risks staff and residents are facing. Providers can lead or delegate (as appropriate) capacity assessments and help the team navigate the distinction between everyday capacity and formal medical competency. But it is ultimately the entire team’s responsibility to understand the plan of care and when intervention is required. To facilitate this, implementation of training aligned with the DIGNITY protocol is essential. Training should ensure all staff members clearly understand their scope, responsibilities, and the practical skills required to support resident autonomy and dignity, as well as knowing what to do when capacity fluctuates, or preferences evolve.

Policy recommendations

Clear policies are required at both the organizational and state level to anchor these practice changes. At the organizational level, standardized internal policies that guide decision-making for and with residents who have impaired cognition are needed. Integrating the DIGNITY protocol into these policies is a potential way to offer a uniform approach across residents with varying cognitive abilities and preferences. A policy aligned with the DIGNITY protocol should, at a minimum, include assessment and documentation of residents’ preferences; a process for initiating and conducting capacity assessments; clear documentation requirements for assessment outcomes and the decision-making process; and mandatory staff training on the policy.

On the state level, advocating for policy and training that delineates the differences between two distinct processes is needed. The first is the formal, often legally binding Medical Decision-Making Competency Evaluation (e.g., for appointing a healthcare proxy or end-of-life care). The second is the more common, task-specific Everyday Decision-Making Capacity Assessment (e.g., for activity participation, personal care, or dietary choices). Such state-level guidance should define when each type of assessment is required and which clinicians are qualified to perform them. Training could include greater attention to concepts of autonomy, self-determination, and increased skill in recognizing resident risk preferences within state-mandated direct care worker certification curricula and continuing education content. Training could also incentivize anti-ageism, focusing on awareness of older adult agency and autonomy, throughout the long-term care sector, including leadership and direct care staff.

Achieving these state-level changes requires broad engagement. It will be necessary to convene groups of NH regulatory leaders, policymakers, NH providers, long-term care ombudsmen leaders, and legal experts to discuss the implications of supporting and honoring greater resident autonomy and the potential positive outcomes resulting from risky decision-making. Furthermore, presenting the DIGNITY protocol to national and state bar associations will be crucial to foster conversation about the need to balance resident safety and quality of care with the recognition of resident rights and guidelines regarding resident risky preferences.

Research recommendations

This case study highlights the limited sensitivity of the commonly used BIMS in detecting subtle cognitive changes essential for supporting daily decision-making in person-centered dementia care. Assessing decision-making capacity requires ongoing interactions with residents rather than reliance on a single test. Several tools can assist with this process, though each has limitations in the nursing home setting such as payment for use or the need for specialized training. These include the Mini-Mental State Examination (MMSE), the Assessment of Capacity for Everyday Decision-making (ACED), and its abbreviated version, the Short Portable ACED (SPACED) (Roman Jones & Morgan, 2025). Additionally, the Elder Self-Neglect Assessment (ESNA) can provide valuable insights into resident safety and autonomy (Roman Jones & Morgan, 2025). The Saint Louis University Mental Status (SLUMS) offers another option for clinical cognitive assessment and is freely available without specialized training (Tariq et al., 2006). Future research should focus on developing or refining decision-making capacity tools tailored for person-centered dementia care, ensuring they are practical and sensitive to the needs of nursing home residents.

Conclusion and limitations

This case study illustrates a successful nursing home example implementing the DIGNITY protocol and demonstrates the individualized, nuanced process of assessing resident decision-making capacity while balancing family and organizational priorities. However, several methodological limitations should be noted. First, this is a single case from one rural Pennsylvania nursing home, which may not represent how the DIGNITY protocol functions in other settings or with broader populations. Second, the case study approach relies heavily on qualitative data and subjective interpretation, introducing potential researcher bias. Finally, the richness of the data may invite overinterpretation beyond what the evidence supports. Despite these limitations, the case highlights positive outcomes for all parties and underscores the value of supporting resident choice and dignity in nursing home care through the DIGNITY protocol.

Supplementary Material

Supp 1

Supplemental data for this article can be accessed online at https://doi.org/10.1080/08959420.2026.2729026

Keypoints.

  • Structured protocols help staff navigate complex decisions for residents with dementia

  • Clear standards for capacity assessment are critical for compliance and care quality

  • Leadership engagement ensures alignment of person-centered care practices with policy and oversight

  • Policies must guide honoring resident choice while meeting safety regulations

  • Policy should support everyday choice-making, not only end-of-life decisions

Acknowledgments

We extend our sincere gratitude to the nursing home residents, family members, staff, and administrators who generously shared their time, experiences, and insights during the implementation of the DIGNITY protocol. Their commitment to advancing person-centered dementia care and supporting resident autonomy was instrumental in shaping this work. We also thank our interdisciplinary collaborators and organizational partners for their contributions to the development and refinement of the protocol.

Funding

This work was supported by the Penn State CTSI KL2 Mentored Career Award National Center for Advancing Translational Sciences, [KL2TR002015] the Ross and Carol Nese College of Nursing, and National Center for Advancing Translational Sciences [TR002014].

Footnotes

Disclosure statement

No potential conflict of interest was reported by the author(s).

Ethical considerations

This study received institutional review board approval with an exemption status from the Penn State Human Research Protection Program [Study00020594] before proceeding with any study activities. Written informed consent was obtained from nursing home staff members and residents prior to collecting any study data from them.

Data availability statement

The data that support the findings of this study are managed in accordance with Penn State’s Research Data Management Policy (RP15). Due to the sensitive nature of the data collected from rural nursing home communities and the involvement of vulnerable populations, the data are not publicly available. However, de-identified data may be made available upon reasonable request to the corresponding author, subject to institutional review and data sharing agreements that ensure compliance with ethical and legal standards.

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Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Supplementary Materials

Supp 1
NIHMS2211759-supplement-Supp_1.docx (41.1KB, docx)

Data Availability Statement

The data that support the findings of this study are managed in accordance with Penn State’s Research Data Management Policy (RP15). Due to the sensitive nature of the data collected from rural nursing home communities and the involvement of vulnerable populations, the data are not publicly available. However, de-identified data may be made available upon reasonable request to the corresponding author, subject to institutional review and data sharing agreements that ensure compliance with ethical and legal standards.

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