Dementia Villages: An Innovative Solution to Aging Care
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Introduction
A case of dementia is diagnosed every 3.2 seconds. Each of these cases represents an individual who has lost autonomy and now relies on others to fulfill their basic needs. Dementia has always been a devastating global threat able to reach anyone, regardless of gender or ethnicity, but as the population both grows and ages, the issue of sustainable care for dementia patients is becoming more pressing than ever. Numerous approaches to dementia care have been tested and implemented globally, ranging from in-home care to institutionalized living, each option putting pressure on family members and causing a loss of autonomy for patients. A more novel care approach which has been recently pioneered is the idea of a "dementia village" in which an entire community is created for advanced dementia patients. These communities are modeled off of towns from the late 20th century and are designed to aid patients in establishing routines and recovering in a safe, monitored environment by way of facilitated nostalgia. Despite the significant benefits associated with this care approach, stark opposition has emerged regarding the ethics and efficacy of villages. This leads to the question of whether the creation of dementia villages is justified given both the neurological reliance on nostalgia and the social impacts of dementia on caretakers and patients. Due to the nature of dementia, a care solution should be primarily evaluated on the comfort that it provides to patients and its ability to absolve loved ones of unwanted responsibility. Therefore, although many argue that dementia villages are deceptive and show few benefits for recovery, dementia villages should be created and implemented to a greater extent because they provide increased freedom to patients and relieve the burden placed on unpaid caretakers.
Dementia
The term "dementia" refers to a collection of symptoms leading to "loss of memory, language, problem-solving and other thinking abilities that are severe enough to interfere with daily life." These symptoms can be triggered by a variety of diseases, the most common of which including Alzheimer's Disease and Vascular Dementia. Regardless of the source of dementia, patients suffer from an inability to safely live without aid from a caretaker.
In most cases this aid comes from unpaid caregivers via in-home care, largely friends or family members of the patient. This puts an immense burden on these caregivers; for example, the article "2024 Alzheimer's Disease Facts and Figures" from the Alzheimer's Association explains that over 11 million Americans provide unpaid care for a friend or relative, which contributes nearly $350 billion to the nation when calculating using the wage of a paid health aide. At the same time, approximately 41 percent of these caregivers have a household income of $50,000 or less. This indicates that many caregivers work a nearly full time job to support a dementia patient while making far below the median household income of roughly $80,000. Additionally, this burden is unfairly distributed amongst demographics, with approximately two-thirds of dementia caregivers being women. Ethnic minorities are also disproportionately represented among unpaid caregivers, often facing added challenges related to healthcare access, financial support, and other systemic barriers. This implies that the issues associated with dementia can even go as far as exacerbating preexisting social inequality.
Other forms of dementia care, such as institutionalization, can still put pressure on loved ones; friends or family members may feel obligated to visit institutionalized patients due to the lack of notable interpersonal interactions in traditional care facilities. Strains on family members are "not solved by the admission of the patient into a nursing home, but are rather shifted to another areas, such as visits to the home, care activities that continue, or discussions with the home staff." Often, this is time consuming and can carry its own economic challenges, thus indicating that third-party care fails to relieve the social strain of dementia.
The Village Approach
With the numerous issues associated with current dementia care, an innovative solution is imperative to provide further freedom to dementia patients and relieve strain on caregivers. One such solution is that of a dementia village; a holistic care approach that frees patients from a hospital environment. The first implementation of this form of care took place in Holland in 2009. Featuring a restaurant, cafe, supermarket, theatre, office, various club rooms, a physiotherapist, a beauty salon, and large open spaces, The Hogeweyk allows for elderly patients to age in a natural and active manner with both autonomy and human interaction. Dementia villages have also been created in other European countries, implementing a scientific approach to dementia accessibility. For example, some villages utilize color coded symbols to help residents establish daily routines. The symbols provide residents with a memory tool that allows for independent navigation despite cognitive deficits. These simplified and accessible communities, with informed design choices, allow dementia patients to experience a familiar environment removed from the chaotic modern world. Familiarity within villages promotes recovery through facilitated nostalgia.
Facilitated Nostalgia
Nostalgia, "a sentimental longing or wistful affection for the past," is a complex neurological process rooted in human evolution. According to Johan Norberg's article "False Nostalgia", evolutionary psychology reveals that nostalgia helps people establish a sense of stability and predictability. Norberg underscores the fact that, "for dementia sufferers, nostalgia can help establish some sense of personal continuity." Clay Routledge, a psychology professor at North Dakota State University, also reports that nostalgia is associated with right-frontal electroencephalogram (EEG) asymmetry. EEG asymmetry is a measure of the difference in brain activity between the right and left frontal regions of the brain. Right-frontal EEG asymmetry has been previously linked with an increase in negative emotions, like loneliness and meaninglessness, thus indicating that said emotions can trigger nostalgia as a regulatory resource. Links between nostalgia and psychology, and nostalgia and neurological behavior, presented by Norberg and Routledge respectively, suggest that experiencing nostalgia can be a powerful coping mechanism; nostalgia can bring stability to a mind addled by dementia. Dementia villages help residents utilize this mechanism, immersing them in a familiar yet safe environment. On the other hand, care approaches such as institutionalization can increase stress and loneliness, thus pushing patients to have a deeper need for nostalgia. In a best case scenario this may only lead to minor discomfort or anxiety, but it can also go as far as to worsen the dementia case. Village care removes unnecessary stressors, like complicated technology and unfamiliar environments, replacing them with a familiar community to form deep interpersonal connections. Therefore, these villages decrease both stress and loneliness while also promoting healthy nostalgia.
Opposition
Despite the numerous advantages of dementia villages, some individuals are opposed to this form of care. Many argue that villages present a fake reality, akin to that of The Truman Show. The Truman Show is a 1998 film in which the protagonist, Truman Burbank, unknowingly lives his entire life inside a massive reality show, surrounded by an artificial town filled with actors. Opponents of the village approach draw parallels between the life lived by Truman Burbank and those of village residents. They raise questions regarding the ethicality of constructing a synthetic world around dementia patients and taking advantage of their condition to do so.
A further limitation of dementia villages is the fact that current research is extremely limited; The Canadian Agency for Drugs and Technologies in Health found that, "there is insufficient evidence to conclude that dementia villages improve [long-term] clinical or quality of life outcomes for residents." Due to this lack of evidence, many argue that villages should not be implemented as a care approach, opting for traditional forms of assisted living or institutionalization.
Perception of Reality
While it may be true that dementia villages provide an altered reality for residents, this is no different than the perceived reality of dementia patients. A person with dementia experiences life in a changing manner as their condition progresses. For advanced patients, whom villages are primarily intended for, changes in perception can include hallucinations, delusions, and time-shifting. These changes make daily life frustrating for both those experiencing them and caretakers. Dementia villages allow for the perceptions of residents to match the reality they live in, reducing the disconnect felt by many patients. This approach also allows caretakers to understand what patients are perceiving, enabling more effective care and lessening stress or confusion. The way in which patients interact with the world around them is already distorted to such a level that a slight deception to comfort patients and minimize the burden of care is justified.
Long-Term Recovery
The argument presented, regarding the lack of concrete evidence verifying the effectiveness of dementia villages for recovery, is applicable to all forms of dementia care. For example, numerous Dementia Care Management programs have been shown to reduce some symptoms of dementia but indicate no significant long term effects on patients' "cognitive status, daily living activities, or [duration of] institutionalization." Most of the diseases leading to dementia are currently incurable, meaning that a solution for dementia care should merely seek to lessen the harmful effects of the condition, rather than achieve long-term recovery. Dementia villages are able to achieve this goal, as well as require significantly less antipsychotic medication to do so. In fact, approximately 50 percent of future residents at Hogeweyk required this medication before the village was created, compared to 12 percent in 2019 after experiencing this form of care.
Furthermore, a successful dementia care model should provide increased short-term quality of life to patients and relieve the burden placed on unpaid caretakers. The first of these goals is achieved in villages through salutogenesis. In dementia villages, salutogenesis, a focus on overall health rather than a specific disease, is used to ensure that residents live as normally as possible while dealing with dementia. These villages are not intended for curing patients, they are instead meant to provide a comfortable life for residents until death. The second one of these goals is also better achieved through dementia villages than it is through in-home care or institutionalization. As seen above, in-home care forces unpaid caregivers to work, making them responsible for the health of a dementia patient. Village care, on the other hand, ensures that trained and paid staff are responsible for patients, removing that particular burden from friends or relatives. The other form of care, institutionalization, also involves trained staff, however, it can cause separation between family members and patients; according to the American Medical Association Journal of Ethics, an institutionalized individual with dementia might experience negative outcomes including a "feeling of disconnection from home, family, community, and meaningful activities." Dementia villages, with numerous opportunities for visiting patients and interpersonal interactions between residents, ensure that friends and family members can stay connected with patients while at the same time not feeling pressured to constantly visit.
Conclusion
Ultimately, the choice of dementia care lies with patients, medical professionals, and relatives. Each case of dementia is unique, requiring a careful analysis in order to act in the best interest of all affected parties. Consideration of both the perspective of a caretaker and that of a patient is imperative to ensure the optimal course of action is selected. This being said, dementia villages should be developed and implemented to a greater extent in the United States, and globally, ensuring that everyone has access to the opportunities and resources needed to make the best care decisions possible. This is clearly plausible as villages have already been employed to a degree, and to accomplish this some of the funds placed towards traditional dementia treatment facilities could be diverted towards the creation of dementia villages. Furthermore, dementia villages could be constructed using preexisting infrastructure, thus decreasing costs and allowing for land to be repurposed. A careful allocation of resources would enable further research into the advantages of the village approach. In essence, dementia villages have the potential to serve as an innovative solution to a growing problem, lessening dementia's burden on both patients and caregivers.