When life is lived with dignity and decline: integration of rehabilitation and palliation in dementia care – a case report

Abstract

Background

The loss of meaning in life often underpins a desire to die, while rediscovering purpose and forming relationships can restore the will to live. This pursuit of meaning and the ability to express one’s identity are central to both rehabilitation and palliative care. This case report examines the integration of these care principles within the framework of “Omsorg,” a Danish word and concept of care rooted in genuine acts of kindness, as implemented at Dagmarsminde, a nursing home for residents with moderate to severe dementia.

Case presentation

Kirsten, an 86-year-old woman with advanced dementia, moved to Dagmarsminde in 2020. Upon arrival, she retained some mobility but exhibited limited facial expressions and impaired language. Her care plan emphasized deprescription, authentic surroundings, and “Omsorg,” fostering engagement and reducing reliance on pharmaceuticals. This integrated approach combined rehabilitation to improve her physical skills and independence with palliative care to support her search for meaning and dignity in daily life. Following a pelvic fracture in 2023, Kirsten underwent tailored rehabilitation, regaining her ability to walk before her condition deteriorated due to dementia progression. In her final stages, Dagmarsminde prioritized dignity and comfort, employing minimal doses of opioids and benzodiazepines to alleviate suffering. Kirsten passed away peacefully in November 2024, surrounded by her family.

Conclusions

Dagmarsminde’s holistic care philosophy integrates rehabilitation, palliative care, and “Omsorg” to empower residents in expressing their identity and engaging in a meaningful community. By prioritizing authenticity, individualized care, and acts of kindness, this approach fosters dignity and well-being throughout life and in its final stages. The case of Kirsten highlights the profound impact of personalized care in affirming an individual’s significance, even amid the cognitive and physical challenges of dementia.

Background

The aim of this paper is to introduce the care approach at Dagmarsminde and provide a structured explanation of its underlying principles and methods, particularly the integration of rehabilitation and palliative care within the framework of Omsorg. This objective is grounded in the case presentation, which serves as a concrete illustration of how these principles are applied in practice.

A meaningful life and valuable relationships often drive our desire to live. Conversely, losing a sense of purpose can provoke a wish to die. Researchers studying older adults’ individuals with a pronounced and heartfelt desire for death identified five themes underlying this wish:

• 1) a sense of aching loneliness.

• 2) the pain of not mattering.

• 3) an inability to express oneself.

• 4) multidimensional tiredness (mental, physical, social and/or existential).

• 5) a sense of aversion towards feared dependence [1].

In a longitudinal follow-up study, researchers found that even a deeply held desire for death can transform into a will to live. Such changes were often attributed to the formation of meaningful connections with others, society, or oneself [2]. Thus, while the loss of meaning in life may lead to a desire for death, rediscovering meaning and building relationships can renew the desire to live. This framework may also resonate with older adults’ individuals living with dementia, although they may struggle to articulate their experiences.

Life at Dagmarsminde is therefore shaped by a commitment to fostering relationships and community, both in rehabilitation efforts and in palliative care. This is reflected in various shared social activities, such as reading the daily newspaper together or participating in group physical training. Additionally, relationships are considered an integral part of alleviating suffering, as small groups of residents are encouraged to support each other both physically and emotionally whenever possible.

However, it is essential to emphasize that the responsibility for creating an atmosphere of both rehabilitation, independence, and relief always lies with the staff. Their role is to facilitate an environment that supports both structured training and meaningful moments of comfort and connection.

In this paper, the authors aim to describe an approach that integrates the professional foundations of rehabilitation and palliative care, while prioritizing the dignity and meaningfulness of life for residents, despite their dementia diagnoses.

Nursing homes in Denmark

In Denmark, both public and private nursing homes exist. In both cases, residents pay for housing, meals, and other living expenses. However, private nursing homes have greater flexibility to individualize their services compared to public institutions. Despite these differences, both types of nursing homes are subject to the same quality standards and regulatory oversight by public authorities.

To be admitted to a nursing home in Denmark, an individual must be assessed as having such a need. This assessment is conducted by publicly employed case managers (visitatorer). Once approved, individuals wishing to move to Dagmarsminde must then sign up for the facility’s waiting list.

Being on a waiting list for a private nursing home does not prevent individuals from being admitted to a public nursing home. As a result, several residents at Dagmarsminde previously lived in public nursing homes before moving to Dagmarsminde.

In general, private nursing homes are more expensive than public ones, and Dagmarsminde is no exception, as its costs are higher than those of an average public nursing home.

This price difference can partly be explained by the fact that private nursing homes are often founded as an alternative to public care, driven by the perception that something is missing in the public system.

At Dagmarsminde, we believe that authenticity and Omsorg are essential values worth investing in. However, we recognize that this creates an undesirable inequality in healthcare, as access to this model of care is dependent on financial resources.

Staff at nursing homes are employed by the facility’s management and may be either trained healthcare professionals or untrained caregivers. However, certain tasks require professional authorization.

A physician is responsible for prescribing and monitoring medical treatments. Most nursing homes have an assigned nursing home physician, but residents have the option to retain their previous general practitioner (GP). Medication administration is a task that must be carried out by licensed nurses.

At Dagmarsminde, both untrained formal caregivers and nurses are employed. The head of Dagmarsminde is a registered nurse who actively participates in daily care and clinical nursing tasks, ensuring close integration of leadership and hands-on practice.

Dagmarsminde and the concept of “Omsorg”

Dagmarsminde and Omsorg are grounded in clinical experience and supported by the evidence mentioned in the background section, which suggests that incorporating community and human relationships can help alleviate the suffering associated with living with dementia. This includes not only the community among residents at Dagmarsminde but equally the relationships between staff and residents, as well as the engagement of residents’ families.

This paper introduces the Danish nursing home Dagmarsminde, a facility for 12–14 residents with moderate to severe dementia, located in Zealand, Denmark (Table 1). Dagmarsminde is founded on three core principles:

Table 1 Dagmarsminde

• 1. Deprescription: Reducing unnecessary medications,

• 2. Authenticity: Creating a homelike, sensory-rich environment with animals, traditional furniture, and familiar domestic elements,

• 3. Omsorg: A uniquely Danish concept of care that emphasizes everyday acts of kindness and mutual respect.

The three core principles of Dagmarsminde are fundamentally aligned with the EAPC’s White Paper on defining optimal palliative care in older people with dementia [3]. The development of professional practice at Dagmarsminde has been guided by these three core principles, with Omsorg as the fundamental and overarching concept. This approach ensures that all aspects of care are deeply rooted in acts of kindness, authenticity, and deprescription, shaping a care model that prioritizes both the well-being and dignity of residents.

Deprescription

The residents at Dagmarsminde engage in both physical and mental activities throughout the day, fostering a natural sense of fatigue. This approach significantly reduces the need for sedatives, as the residents are able to achieve restful sleep organically through their active daily routines.

Authenticity

A fundamental concept at Dagmarsminde is authenticity, particularly as it pertains to aesthetics. The environment is designed to resemble an ordinary home, fostering a sense of comfort and familiarity for the residents. This concept is reflected in various models of small-scale, homelike residential care, including dementia village models [4]. There is, however, an ongoing debate regarding dementia villages. Some argue that they are disguised nursing homes, where residents are misled into believing they are part of a world that does not truly exist [5].

At Dagmarsminde, authenticity is essential. Everything is as it appears to be, there are no simulated grocery stores or artificial settings. Instead, the living room is furnished to resemble a real home, with furniture that mirrors what one would typically find in a living room. This ensures that residents experience a genuine and familiar environment, rather than an illusion.

For instance, animals such as goats, chickens, rabbits, and a dog live alongside the residents, contributing to a lively and engaging atmosphere. The home features traditional furniture, abundant green plants, authentic artwork, cozy lighting, rugs, and antique porcelain, which collectively enhance its homelike quality. Additionally, sensory experiences are thoughtfully incorporated, including the aroma of freshly baked cakes, soothing music, and the use of essential oils. The overall layout of Dagmarsminde is intentionally crafted to feel like a genuine home rather than a clinical institution or workplace.

At Dagmarsminde, a key point is that dementia-friendly initiatives are not implemented episodically but are instead an integrated part of everyday life. This approach ensures maximum familiarity and predictability, which are crucial for enhancing quality of life and creating a stable, reassuring environment for individuals living with dementia [4].

Understanding “Omsorg”

Omsorg lacks a direct English equivalent but is often translated as “care”, “solitude” or “compassion.” However, these translations fail to capture its essence. Omsorg refers to the sincere acts of kindness that stand somewhat in contrast to how compassion is often framed in modern literature—as resilience-building and primarily aimed at reducing burnout [6,7,8,9]. Very simply put, while compassion sometimes focuses on how the individual healthcare professional experiences and processes encountering suffering, Omsorg is more practical and concrete. The emphasis is not on the healthcare professional’s emotional response but rather on how the suffering person is feeling and how their distress can be alleviated. Omsorg emphasizes simple, genuine acts of kindness. It involves a reciprocal exchange where both the caregiver and recipient experience human warmth and kindness, in compassion emphasis is placed upon understanding [6, 10].

The Danish philosopher K. E. Løgstrup described such acts as “sovereign expressions of life,” rooted in trust and the belief that our actions can positively impact another’s well-being. Unlike clinical or institutional “care,” Omsorg is unmediated, heartfelt, and intrinsic to human relationships. Thus, the two concepts are related and in no way contradictory, but somehow omsorg is more a common and fundamentally human act of kindness. Omsorg is something one gives, feels and receives. Research suggest that small acts of kindness also bring happiness to those who perform them [11].The concept of “care” can be drawn into all kind of discourses such as economic and efficiency measures. Thus, care is a broad concept that includes, among other things, specialized palliative care, professional care in hospitals, nursing care and caring for loved ones. In comparison, omsorg refers to acts of kindness, that are carried out in everyday life, with the genuine kind intention to do something good for another. Nothing more, nothing less.

At Dagmarsminde, Omsorg is a guiding principle that fosters a sense of dignity and security for residents. Omsorg is used as a way of being together in mutual respect a way for the residents to life a normal life in spite of dementia and without wrapping the care in complexity [12].The ambition of Dagmarsminde is not to build a highly instrumental and technology-driven nursing home, but rather a nursing home devoted to providing omsorg for residents. The hypothesis at Dagmarsminde is, that people living with dementia feel stigmatized and unsure of what the surroundings, society and other people expect of them, which again leads to restlessness, anxiety, and low self-esteem. Therefore, we deliberately take effort in not talking or focusing on the diagnosis of dementia, nor to introduce specific “dementia-friendly” initiatives. Instead, the aim is to provide residents with a life in ordinary, homely surroundings and true meaningful activities.

In modern understanding of existential suffering is an integrated model of physical, Emotional, Cognitive, Social and Spiritual dimension [13]. The first step in existential relief is to calm the physical nervous system. At Dagmarsminde, omsorg is the method used. A life in Dagmarsminde is a life with laughter when something is funny and human comfort through touch and presence when someone is sad.

Case presentation Kirsten’s life at Dagmarsminde

Kirsten, an 86-year-old woman, has been residing at Dagmarsminde since 2020. Upon her arrival, she exhibited a steady gait and walked frequently. However, her facial expressions were limited, and her language abilities were significantly impaired. Despite these challenges, she clearly expressed her preferences and aversions. Initially, her balance was stable, and she enjoyed daily walks.

Upon moving to Dagmarsminde, Kirsten was undergoing medical treatment for asthma, hyperthyroidism, and gastrointestinal ulcer. She also received paracetamol for pain. Asthma medications were also stopped when Kirsten was unable to cooperate in taking them, without any recurrence of symptoms such as coughing or wheezing. Furthermore, no signs of reflux or gastrointestinal ulcers reappeared, even with the use of NSAIDs for later treatment.

Kirsten’s occasional restlessness, previously managed with quetiapine, was reframed as a reflection of her strong-willed personality, as described by her family. She was given the freedom to move around the garden as she wished, often sitting on a rocking bench to watch the goats and chickens. Engaging in physical and mental activities during the day enabled her to sleep well at night without sedatives. Gradually, quetiapine was reduced and eventually discontinued.

On March 30, 2023, Kirsten experienced a fall, resulting in a pelvic fracture. Although this was not her first fall, the severity of the injury required a brief hospitalization for radiological examination. Rehabilitation began the following day at Dagmarsminde. This included group training sessions in a wheelchair and gradually increasing walking exercises, initially with two staff members and eventually with one.

Over the course of several months, Kirsten regained her ability to walk independently. Pain management during her rehabilitation involved paracetamol and short-term NSAID use, avoiding opioids due to concerns over cognitive and balance-related side effects.

By mid-2024, Kirsten’s condition deteriorated significantly due to the progression of dementia. She lost her ability to walk, and her facial expressions became almost nonexistent. Despite these challenges, Kirsten continued to engage with her surroundings through visual observation. She was assisted daily in transitioning from bed to wheelchair, ensuring she remained an active participant in the communal life at Dagmarsminde. The care philosophy focused on providing her opportunities to express herself and fostering a sense of belonging.

As her condition worsened, Kirsten entered the final stages of life. Dagmarsminde’s approach shifted to prioritizing dignity and comfort in death. When residents become bedridden during their final days, they receive subcutaneous opioids and benzodiazepines at the lowest effective doses to alleviate physical and existential suffering. In Kirsten’s case, this transition included a move from buprenorphine to fentanyl patches, with supplemental doses of oxycodone and midazolam.

By late November 2024, Kirsten’s health had further declined. Her husband and two adult sons stayed by her side, providing emotional support during her final days. Her suffering, a combination of physical pain from immobility and existential distress from her inability to express autonomy. A soothing atmosphere was created in her room, with soft cushions for physical comfort and a strong emphasis on “omsorg”.

Kirsten passed away peacefully on November 28, 2024, surrounded by her family.

Integration of rehabilitation and palliative care in Dagmarsminde

Rehabilitation at Dagmarsminde encompasses both group activities and individualized plans tailored to the residents’ needs. Group training sessions are conducted daily in the living room, engaging all residents to the extent of their abilities. These sessions focus on stimulating physical activity in large muscle groups, fine motor skills in the fingers, and facial muscles—often encouraged through smiles and laughter. The exercises are led by the staff following a structured manual that provides clear instructions for simple yet effective routines. Beyond physical benefits, group training fosters a sense of belonging, offering residents an existential experience of participating in a meaningful community.

Each resident has an individualized activity plan that outlines what they can do, their daily physical activity goals, and any limitations. For example, some residents, like Kirsten, benefit greatly from the ability to move around freely when the urge arises, while others find comfort and fulfillment in being part of the group environment. These seemingly spontaneous actions often reflect a profound expression of the resident’s inner self. Recognizing and respecting these expressions contributes to existential relief and reaffirms the individual’s intrinsic worth.

Palliative care at Dagmarsminde similarly emphasizes independence and the opportunity for residents to express their unique identities and desires. While dementia may diminish cognitive reflection and the ability to articulate personal values, the belief remains that every individual retains intrinsic values. The palliative care approach is guided by a modified version of the 4-2-4-2 model, originally developed for patients with severe lung failure [14]. This model provides a structured framework for addressing the complex needs of residents. Brief Summary of the 4,2,4,2 Model. The first “4” outlines four different trajectory types, each with a distinct treatment goal based on prognostic considerations, ranging from strengthening, to stabilizing, to preparatory, and finally, ensuring a dignified death. Each goal is associated with specific pharmacological and non-pharmacological treatment considerations. For instance, a person with an illness may benefit from classical rehabilitation, whereas in cases of significant biological progression, supportive and palliative interventions become more appropriate.

The first “2” represents the two forms of knowledge required before establishing a treatment plan: objective knowledge (clinical data, medical history) and intuitive knowledge, which emerges through conversation, clinical examination, and interpersonal interactions.

The next “4” refers to the four dimensions of suffering described by Cicely Saunders—physical, psychological, social, and existential.

The final “2” differentiates whether the suffering to be alleviated is a problem that can be fixed (e.g., a urinary tract infection) or a condition that must be accompanied, such as grief or the anticipation of death.

This model provides a systematic and structured approach to individualized treatment, ensuring that care aligns not only with the patient’s medical needs but also with their broader lived experience.

Discussion and conclusions

With this case report, we describe a concrete clinical approach to caring for individuals with dementia, an approach that integrates rehabilitation and palliative care expertise alongside a deeply rooted commitment to acts of kindness, encapsulated in the concept of Omsorg.

The authors are fully aware, and wish to emphasize, that this report is not an outcome analysis or a systematic evaluation of the results of this approach. Rather, it is the story of a home, Dagmarsminde, and a woman, Kristen, who spent part of her life there. A central point is to give people with dementia the opportunity to do what expresses themselves and be a part of a meaningful community.

Given that social relationships and the pursuit of a meaningful life are central to many older individuals’ desires to live or die [1, 2], it may seem surprising that most studies on the integration of rehabilitation and palliative care fail to emphasize the social and existential dimensions of care [15]. This case report highlights Dagmarsminde’s approach, which incorporates the concept of “Omsorg” and integrates rehabilitation and palliative care. The central aim is to offer individuals with dementia the opportunity to engage in activities that express their identity and be part of a meaningful community.

In the case of Kirsten, this involved walking in the garden, sitting on a rocking bench, and observing animals living their lives. While this provided meaningful engagement, it also posed a fall risk, which unfortunately occurred. One fall resulted in a pelvic fracture. At Dagmarsminde, 15% of residents experience falls annually, compared to an estimated 50% of individuals with dementia in nursing homes, according to the Danish Dementia Research Centre [16].

The pharmacological approach at Dagmarsminde is also aligned with the integrated rehabilitation and palliative care model. Efforts are made to minimize the use of opioids, benzodiazepines, and antipsychotics, and in most cases, these medications are completely eliminated, given the limited evidence of their benefits for the nursing home population [17]. As a result, the average resident at Dagmarsminde takes only one medication, compared to the national median of eight medications for nursing home residents [18]. But in the care of bedridden individuals in the final days or weeks of life, opioids and benzodiazepines are crucial components of palliative pharmacological management.

Researching small nursing homes and an Omsorg-based approach presents challenges, as human interactions cannot be standardized. Our 4,2,4,2 model seeks to standardize the approach without standardizing treatment.

If residents at Dagmarsminde fare better, is it due to the small size, staff quality, leadership involvement, presence of animals, rural setting, or selection bias? Likely, it is a combination of factors.

Ensuring systematic and transparent knowledge generation requires multiple scientific methods, as RCTs may not always be suitable for complex care environments. This case report is one step in a broader effort to understand how to create the best and most dignified life for people with dementia.

Conclusion

The care provided at Dagmarsminde is rooted in ongoing efforts to recover lost abilities due to illness (rehabilitation) and to provide the best possible quality of life despite irreversible losses (palliative care). Together with the concept of “Omsorg,” this approach enables residents to express their identities, feel part of a meaningful community and ensures that Dagmarsminde affirms their significance throughout life and even in death.