The Paradox of Dignity in Dementia Care: A Call to Re-Evaluate Regulations

As professionals dedicated to the care of individuals with dementia, we are entrusted with a unique responsibility: to protect their rights while preserving their dignity. However, this dual mandate can create a difficult paradox, particularly when regulatory compliance clashes with the principles of person-centered care. This tension is most acutely evident in regulations that mandate a resident’s personal involvement in signing contracts and care plans, even when their cognitive state renders such actions stressful, disorienting, and ultimately meaningless. 

While the specific case studies discussed in this article focus on the local interpretation of Pennsylvania Code §2800.25, similar person-centered regulations exist nationwide that may inadvertently cause distress for those with cognitive impairment and put their caregivers—both family and staff—in uncomfortable positions regarding participation in their care plans. It is also important to recognize differences in governing bodies and their requirements for documentation and participation. Most of the regulatory content in this article refers to the challenges in long-term care settings, primarily assisted living (AL), among individuals with cognitive decline.

In the United States, 46 states and the District of Columbia specifically require a consumer disclosure or a written resident agreement upon admission. Nearly 92% of all AL facilities in the United States are required by state law to establish and update formal care plans annually or upon significant change.¹ While the specific statutory language varies, most of these states emphasize “informed consent” and “resident participation” as core regulatory standards. Therefore, almost every AL administrator in the country faces the same clinical and ethical dilemmas experienced in Pennsylvania: how to fulfill the mandate for "meaningful participation" when a resident has severe cognitive impairment or anosognosia.    

In Pennsylvania, the Department of Human Services (DHS) regulation §2800.25 requires that a “written resident-residence contract” be signed by the resident, the administrator, and the payer.² While well-intentioned, this “one-size-fits-all” approach fails to account for the psychological realities of dementia. For many residents experiencing “reality disjunctures” that disrupt their abilities, grappling with paperwork they cannot understand may trigger feelings of confusion, fear, and anxiety.³ This may be a resident’s first time confronted with legal documents requiring a signature since diagnosis, an experience that can undo the trust and sense of security their care community has worked hard to build.

As we learn how to navigate appropriate boundaries with someone struggling with dementia, we are confronted with the incredibly unique challenge of engaging someone in their care plan when they often do not believe they are at all in need of assistance.

While each state can allow a representative to sign an admission agreement in situations where power of attorney (POA) or conservatorship has been established, non-conserved residents must still sign a written statement acknowledging their rights, the rules of the community, and their care plans. Although 18% of communities in the US provide secure memory care, this challenge is widespread and affects many families bringing their loved ones to a care community—it is not solely a memory care issue.⁴ A Maryland study showed residents in AL non-dementia-specific units scored an average Mini-Mental State Examination score of 15.3, indicating that even in unsecured settings, most residents function at a level of moderate cognitive impairment that makes legal signatures ethically questionable.⁵

Family representation in these circumstances can be difficult to obtain. Regulations assume a willing family member is available to advocate for the resident, but the clinical reality is often one of caregiver withdrawal. Family members, particularly those of residents with severe behavioral disruptions, show a prevalence of psychological distress as high as 26%, often leading to social isolation and emotional detachment from the care process.⁶ For these families, being asked to sign a care plan that documents their loved one’s decline is not a "person-centered" courtesy; it is a traumatic event that may trigger further withdrawal. Family members who may be experiencing the intense burden of caring for their loved ones may withdraw altogether from phone calls and visits. 

The court-appointed guardian system presents another barrier to caregiver involvement. According to one Massachusetts study, 3% to 10% of older adults in long-term care are unrepresented and appointed a guardian. These unrepresented adults experience 66% more prolonged hospital stays and 52% more delays in receiving palliative or hospice care because there is no immediate authorized person available to sign consent forms.⁷ For the estimated 3% to 10% of “unbefriended” residents, the regulatory requirement for a signature rests on court-appointed guardians who are often overextended or geographically distant. The Massachusetts study also shows that it can take an average of 17 days to find an appropriate guardian for an unrepresented older adult.⁷ By mandating signatures in these cases, the regulatory framework inadvertently penalizes the most vulnerable residents, whose care is stalled by the very paperwork designed to protect them.

In addition, the widespread presence of anosognosia—the inability to recognize one’s own cognitive deficits among individuals with dementia8—likely exacerbates this dilemma. When a resident is required to review their care plan, they may be confronted with a document that details their inability to perform basic tasks, such as toileting, using a key, or feeding themselves. For a person experiencing anosognosia, this is not a clinical assessment but a direct affront to their capabilities and independence. This disconnect can lead to increased agitation and withdrawal⁸ that may shatter the fragile trust between a resident and their caregivers. 

To further expand the scope of this dilemma, it is important to note that it does not start or end with dementia or age-related decline. Health care systems around the country may be overlooking the prevalence of anosognosia in many other non-age-related situations. Often mislabeled as denial, anosognosia is prevalent in 50% to 90% of individuals with schizophrenia, Our systems have not yet adapted to reflect this common component of cognitive decline or injury; instead, communities may inadvertently prioritize "patient-centered" checkboxes over the complex reality of brain illness. This creates a conflict in which choosing the "dignified path" (eg, not divulging every detail of a care plan or forcing patient engagement) may appear as noncompliance to an inspector.

The immediate response to this dilemma is often to note that care plan forms have an option to indicate that a resident either “refuses” or is “unable” to sign. However, selecting this option often triggers significant scrutiny. In Pennsylvania, DHS measures compliance through records and interviews, which may put many communities, staff, and families in confrontational situations during admission, particularly due to the high prevalence of dementia in nearly all facilities across the country. As a widespread issue, it is not surprising that the dilemma has arisen in Pennsylvania, which was recently ranked as having the highest deficiency rate in the United States. Between 2022 and 2025, 93% of AL and memory care communities in Pennsylvania were cited for at least one deficiency, most of which were care plan violations.⁹ 

The Regulatory Compliance Guide defines a “repeated violation” as noncompliance with the same regulation number within the prior 12 months. The US DHS uses a shortened inspection version called the Licensing Indicator System that measures a small number of “predictor” regulations. If a facility shows complete compliance in these areas, high compliance is predicted overall. However, if a facility fails an indicator (eg, required signature on a support plan), it can trigger a full-scale, intensive inspection. Marking a care plan as “unable to sign” without meeting strict documentation standards can be cited as a failure to have a completed or signed contract.¹⁰ Upon discovering several unsigned care plans, DHS may choose to further investigate to confirm the community’s decision or inability to include the signature. Required documentation to prove a resident chose not to engage with their plan could include nursing notes, documented or reported incidents to the state, and family reports. Even with such evidence, DHS may still conduct inspections and interviews, contributing to a prolonged and stressful environment that many administrators seek to avoid. To avoid these lengthy surveys, administrators may pressure their staff into acquiring signatures, potentially bypassing the resident’s emotional needs.

In more than 7 years of hands-on experience with individuals in memory care, I have seen the devastating effects of this practice. As a member of floor staff, coordinating staff, and then ultimately as a director, I struggled both internally with my conscience and externally with the residents themselves; however, my goal was always to ensure a resident has fair and equal access to their own health information while maintaining the highest level of dignity and security as possible. Unfortunately, dementia does not allow for nuanced understanding of one’s own health, and forcing the proof of one’s mental decline into the forefront of a resident’s attention is largely documented as an ineffective and ultimately destructive strategy.³

During my work in memory care settings, I observed residents who, after finally flourishing in a group setting, experienced significant setbacks after stressful conversations about paperwork that had no bearing on their day-to-day lives. As a personal example, I distinctly recall this deterioration of trust with a resident named Margaret, who had returned to memory care after a significant hip injury and a short-term stay in rehab. Her injury required extensive therapy and kept her in a wheelchair for a significant period. As the effects of anesthesia can linger extensively with dementia,¹¹ she experienced a heightened level of confusion beyond her original diagnosis. Although she recognized us and was pleased to return to her room—an easy readmission in itself—she hesitated to engage with the extensive care plan we were required to review with her. Her heightened confusion and anxiety surrounding her injury and recovery significantly inhibited her ability to engage with the material. She ended up in tears, apologizing profusely that she did not feel comfortable signing the papers, knowing she did not understand them. She believed she was disappointing us by refusing, even though we tried to reassure her that we understood her hesitancy and that there was no need to panic over the paperwork. Unfortunately, damage was done; Margaret became fixated on a reality her dementia had created: In her mind, her refusal to sign meant she would be evicted and left untreated, and her family did not know where she was, leaving her alone and frightened.

It is not only disrespectful to prompt a person with diminished cognition to sign documents they cannot comprehend, but it may also place staff in an ethically compromising position. In cases where a resident physically cannot sign a document, staff members are sometimes asked to hold his or her hand to complete the signature—an uncomfortable request that conflicts with the integrity of any caregiver. When the primary motivator for document completion is simply to avoid undue scrutiny, the “person-centered” aspect of the care plan is rendered meaningless.

When a person in memory care is placed on hospice, the requirement to engage in their care plan remains the same. Regardless of POA approval, which is required before the hospice evaluation may begin,¹² staff must attempt to engage the person in this newfound stage of their life, which is often rife with significant impairment. As a director of memory care, I worked very hard to pair residents with the appropriate hospice resources to honor their previously written living wills and advance directives. I felt extraordinary pressure to encourage these residents, who were sometimes mere weeks away from their passing, to make a mark or an "X" on paperwork with a staff member’s assistance. Knowing that many of these residents were incapable of grasping a pen or reading the document left memory care staff uncomfortable as they wrestled with feelings of dishonesty.

Modern research built on the foundation of Naomi Feil’s Validation Therapy strongly emphasizes the need to meet individuals in their current reality rather than forcing them into the present.¹³ This approach acknowledges that a person’s lived experience, whether rooted in the past or in a different reality, is valid. Forcing residents to engage with difficult topics, including finances, end-of-life care, or their own limitations, can have disastrous consequences on their emotional well-being.¹³ While residents must always be offered the opportunity to participate in their care, we must recognize that for many, particularly those with paranoia or delusions, being pressured to engage with this material may cause fractures in family relationships that are already strained by their disease.

Common roadblocks inhibiting relationships between memory care residents and their families can often stem from anger and frustration, from either party, with that relationship continuing to decline over the course of the illness.¹⁴ As a person wrestles with the loss of freedom—financial, physical, or mental—they are now presented with written proof that their family does not trust them anymore, which may result in the final push necessary to topple a once healthy relationship within the family.¹⁵ A team of medical professionals has already deemed this person incapable of caring for themselves, and the resident’s family has agreed to move forward with care as stated in their wills and directives. When we reach that point as a team, we are obligated to alter our communication with the resident, shifting our focus from harsh truths to comfort and stability.

We have a duty to advocate with compassion for those who can no longer speak for themselves. The regulatory framework should be reconsidered with a more person-centered lens, allowing for alternatives that honor advance directives and POAs already established by residents and their trusted confidantes. This shift would protect dignity, foster trust, and ensure that our regulations serve the best interests of those they are meant to protect.

I have actively explored avenues to discuss this matter with state government and regulatory bodies, including direct engagement with contacts at the US DHS and the Pennsylvania Department of Health. I have also approached officials in person at professional conferences to highlight the impact of this regulation on residents. To date, these efforts have not led to a substantive response, but I am continuing to explore new avenues to ensure this critical issue is discussed extensively on behalf of our loved ones with dementia.

• Regulatory requirements for resident participation in care planning may conflict with person-centered dementia care when cognitive impairment or anosognosia limits an individual's ability to understand or meaningfully engage with documentation.
• Requiring residents with dementia to review and sign care plans or contracts can increase confusion, anxiety, agitation, and mistrust, potentially harming resident well-being and straining relationships with caregivers, staff, and family members.
• Long-term care policies should incorporate greater flexibility for surrogate decision-making and established advance directives, allowing clinicians to prioritize dignity, emotional safety, and individualized care while maintaining appropriate regulatory oversight.

Abigail Bailey, CDP

Disclosure: The authors declare no conflicts of interest. 

Address correspondence to:

Abigail Bailey, CDP

Email: abigailbailey0807@gmail.com

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Any views and opinions expressed are those of the author(s) and/or participants and do not necessarily reflect the views, policy, or position of the Annals of Long-Term Care or HMP Global, their employees, and affiliates.

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