A Paradigm Shift on Deinstitutionalization and Dementia Care: A Narrative Review

Abstract

This narrative explores the impact of deinstitutionalization policies on the quality of life and care outcomes for individuals with Alzheimer’s disease and related dementias. We offer a historical perspective on these policies, their implications on dementia care, and the barriers to deinstitutionalization. The potential benefits of deinstitutionalization, such as improved quality of life and access to community-based support and services, are highlighted. Challenges and controversies surrounding safety, caregiver burden, and resource allocation are also examined. Ethical considerations related to the autonomy and decision-making capacity of people living with dementia are discussed. We present best practices and innovative models in dementia care that balance deinstitutionalization with appropriate care. We further put forth recommendations for future research and policy development in dementia care and deinstitutionalization, emphasizing the need for a balanced approach that respects the autonomy and preferences of people living with dementia while ensuring their safety and well-being.

Keywords

Alzheimer’s disease care outcomes caregiver burden community-based support deinstitutionalization dementia care ethical considerations policy development quality of life resource allocation

DEINSTITUTIONALIZATION, DEMENTIA, AND NURSING HOMES

Deinstitutionalization in mental health is defined as a significant shift in healthcare policies that promotes the transition of individuals with mental disabilities from institutionalized settings, such as public or private psychiatric hospitals, to their families or community-based homes [1]. This process involves the gradual relocation of residents to regular, community-oriented housing. It is characterized by the development of services that foster inclusion and active participation in the community. These services provide flexible and personalized assistance, support, and coordination, enabling individuals to lead the lives they desire. This process is complex and long-term, and many countries struggle to achieve progress and consolidation [2]. It is not merely a cost-cutting exercise; it is a way to ensure that the fundamental human rights of people with disabilities are upheld.

This manuscript explores the complex nature of dementia, which, while traditionally classified as a neurological condition due to its roots in the physical degeneration of the brain, also has significant mental health impacts. Recognizing dementia’s profound effects on memory, cognition, personality, and emotional control, it rightfully falls under the umbrella of mental health conditions. This perspective does not diminish the neurological basis of dementia but rather underscores the necessity of a comprehensive approach to care and treatment. Moreover, it is crucial to underscore that living with dementia cannot be understood solely from a medical or health perspective. Dementia affects all aspects of a person’s life and therefore requires a multidisciplinary approach that considers the social, psychological, environmental, and practical dimensions of everyday life. From the perspective of people living with dementia and their families, these aspects must be recognized and addressed.

In the context of deinstitutionalization, people living with dementia (PlwD) present a unique challenge. Despite the shift towards community-based mental health services, PlwD often require specialized care and support that may not always be available or adequately provided in these settings [3]. This highlights the need for a more integrated, person-centered model of care that addresses both the neurological and mental health aspects of dementia, as well as the broader psychosocial factors that influence the quality of life for PlwD and their families.

The traditional use of nursing homes as the primary care option for PlwD has been a subject of controversy. Conflicts among PlwD frequently arise within long-term care environments, often attributed to the cognitive impairments associated with dementia. However, a growing body of evidence suggests that inadequate care and neglect by care homes often constitute the real problem [4]. Factors contributing to conflicts in nursing homes for PlwD include sharing a room, lack of private space [5], lack of meaningful activities [6], and a shortage of staff [7]. Additionally, the use of psychoactive drugs is more prevalent in nursing homes than in homes for PlwD [8] and this use is associated with significant adverse outcomes such as increased mortality, falls, and fractures [9].

RESEARCH QUESTION AND OBJECTIVES

Given this context, this narrative review aims to address the following research questions: “What is the comprehensive impact of deinstitutionalization policies on dementia care, considering historical effects, current implications, potential benefits, challenges, ethical considerations, and the emergence of innovative models and best practices?” The objective is to comprehensively review existing literature on this topic, highlight gaps in current knowledge, and suggest directions for future research. This narrative review addresses a significant gap in understanding how deinstitutionalization policies affect PlwD.

METHODS

This narrative review adopts a comprehensive and systematic approach to identify and analyze relevant literature on deinstitutionalization in PlwD. The methodological framework included: (1) Search strategy: A systematic approach was employed to identify articles from three databases, including PubMed, PsycINFO, and Scopus. Articles published from January 2000 to September 2023 were selected to ensure inclusivity and relevance. Search strategies involved various combinations of keywords and subject headings such as “deinstitutionalization”, “transitions”, “discharge”, “move”, “dementia”, “Alzheimer”, “Alzheimer’s disease”, “mental health”, “facility”, “long term care”, “nursing home”, “assisted living”, “home care”, and “living arrangements”. Searches were limited to English-language articles only. (2) Study selection: Inclusion criteria required articles to: a) focus on the transition to the community from long-term care for PlwD and/or mental health issues; b) include a community-based dwelling as the location of the transition; c) include persons over the age of 65. Articles published before the year 2000, irrelevant studies not addressing the specified focus areas, and those that exclusively study transitions from specific settings like hospitals or non-institutional environments were excluded from the review. A preliminary screening based on titles and abstracts was conducted, followed by a full-text review to assess eligibility. Out of the original 236 articles selected for review, fifty-nine articles fulfilled the criteria for inclusion in this narrative review, spanning 16 countries: U.S.A., Germany, Canada, UK, Australia, France, Norway, Brazil, Ireland, Denmark, Italy, Netherlands, Taiwan, China, Spain, and Austria. (3) Text analysis process: The text analysis process for this narrative review was conducted systematically and comprehensively. It began with a complete reading of each article to understand its content and context. Key points and findings were noted for further analysis. A detailed analysis followed, identifying specific themes, trends, and patterns related to deinstitutionalization in dementia care. The methodologies used in each study, the implications of the findings, and any identified gaps or limitations were also examined. The findings from each article were compared to identify overarching themes and trends across the literature. This comparative analysis facilitated a nuanced understanding of the topic. Finally, the key findings from the text analysis were synthesized into a narrative review. This synthesis provided a comprehensive overview of the existing knowledge on deinstitutionalization in dementia care. This systematic approach to text analysis ensured a robust review of the selected articles, offering valuable insights into current research trends, challenges, and future directions in this critical area.

HISTORICAL PERSPECTIVE AND BARRIERS TO DEINSTITUTIONALIZATION IN DEMENTIA CARE

The historical trajectory of deinstitutionalization, which emerged in the post-World War II period in the 1950s in the US and the UK, was driven by factors such as poor and inhumane living conditions, human rights violations, harmful treatment practices, the introduction of more effective psychotropic drugs and the high cost of mental hospitals [2]. This movement significantly shaped current approaches to dementia care, prompting a shift from an asylum model to a community model, and leading to the establishment of a deinstitutionalization movement [10]. This change has focused on providing improved dementia-specific training to healthcare professionals and supporting medication and rehabilitation interventions as potential ways to improve dementia care for all [11].

In conjunction with the historical narrative, it is imperative to distinguish the shortcomings of state hospitals for individuals with severe and chronic mental health conditions and the political motivations behind their reform. Despite their intention to provide care, state hospitals often fell short due to issues such as overcrowding, underfunding, and a lack of understanding of mental health conditions [12]. Reform efforts were primarily politically motivated, driven by a desire to reduce state spending and a growing recognition of the human rights of institutionalized individuals [13, 14].

However, these reforms were not consistently aimed at PlwD, leading to the oversight of their unique needs and experiences in broad policy changes [15]. While progress has been made around deinstitutionalizing mental health care, PlwD encounter persistent barriers to deinstitutionalization. The stigma surrounding dementia, limited engagement and access to healthcare, cultural and linguistic validation challenges, a shortage of dementia-capable workforce, competing healthcare system priorities, and inadequate health financing contribute to these barriers [16, 17]. Moreover, evidence suggests that current dementia care is marked by inequalities, particularly for those living in rural areas or from minority ethnic backgrounds [18].

The current paradigm shifts towards a person-centered approach in dementia care highlight intentional efforts directed at PlwD, aiming to transition from institutionalization towards community-based care. This approach seeks to promote autonomy, dignity, and improved quality of life for PlwD, acknowledging them as individuals with unique needs and preferences [15 , 19–21]. This paradigm shift represents a significant step forward in our approach to dementia care, underscoring the importance of viewing PlwD as individuals with unique needs and preferences rather than a homogenous group.

Understanding the factors leading to institutionalization in dementia becomes crucial. Research has shown that PlwD often requires institutionalization when they can no longer care for themselves [22]. The type and severity of dementia, the caregiver’s age, the relationship with the patient, and the level of caregiver burden, have been identified as significant factors associated with institutionalization [23]. This often occurs when the care needs exceed the capacity of the caregiver, particularly in cases of severe disability and high caregiver burden [24].

Preventing premature institutionalization is a key goal in promoting the well-being of PlwD. Policies supporting caregivers, reducing caregiver burden, managing behavioral disturbances, and community-based services can delay institutionalization [25, 26]. Nonetheless, it is essential to recognize situations where institutional care may be the most appropriate option for ensuring safety and well-being. Policies and interventions should, therefore, address both preventing premature institutionalization and ensuring timely access to institutional care when needed [25, 26]. This comprehensive approach acknowledges the multifaceted nature of deinstitutionalization, dementia care, and the complex factors influencing institutionalization.

DEINSTITUTIONALIZATION POLICIES AND IMPLICATIONS ON DEMENTIA CARE

Deinstitutionalization policies implemented worldwide with diverse approaches and challenges, advocate for transferring individuals from institutional settings to community-based homes. In regions such as Europe and Central Asia, reforms spanning over 15 years have led to the closure of large-scale institutions for children, replaced by family-based alternatives. These reforms align national laws with international standards, involve strategic planning for institution closures, and focus on transitioning staff to new childcare services and employment opportunities [27, 28]. In the United States, the “Money Follows the Person” (MFP) demonstration is a significant initiative that supports state efforts to rebalance their long-term services and support system [29]. The MFP program has facilitated the transition of over 100,000 individuals from institutionalized settings into community-based environments, enhancing their quality of life and preventing re-institutionalization by allowing them to reside in their preferred locations. This also results in substantial financial savings for Medicaid programs [30].

While deinstitutionalization has positively impacted the quality of life and global functioning of many individuals, it seems to have overlooked those who are long-term hospitalized, aging, and diagnosed with severe mental disorders or dementia [10]. The process of deinstitutionalization presents challenges that are often difficult to overcome for individuals with severe mental illness and dementia to overcome [31]. Current dementia care reveals disparities, particularly for those in remote areas and among ethnic minorities, which limit access to crucial post-diagnostic support services [10].

It is imperative to broaden the policy discussion in the context of deinstitutionalization in dementia care. Firstly, housing-related policies must ensure safe and comfortable living environments that contribute to the well-being of PlwD [32, 33]. Secondly, recreational services should provide opportunities for social interaction and engagement, which are vital for maintaining cognitive function and enhancing the quality of life [34, 35]. Thirdly, social services play a pivotal role in providing support and resources to PlwD and their caregivers [36, 37], and transportation services are essential for enabling access to healthcare services and community activities for PlwD [38]. Funding policies should ensure adequate resources for the implementation and sustainability of community-based services tailored to the unique needs of PlwD. These services have shown promising outcomes in improving the quality of life and delaying institutionalization, such as the “PACE” Program in the U.S. [39]. Moreover, policies should promote evidence-based community programs, like “COPE”, which have demonstrated beneficial outcomes related to health and cost savings, encompassing interventions from cognitive stimulation to caregiver support [40, 41]. Another example is “CAPABLE”, a community-based program focused on environment and function to reduce disability among older adults [42].

In conclusion, a comprehensive and inclusive policy discussion is essential for advancing the process of deinstitutionalization in dementia care. This approach ensures that PlwD receive the necessary care and support in the community. It addresses the complexities of housing, recreation, social services, transportation, and funding for specific models of community-based services.

POTENTIAL BENEFITS OF DEINSTITUTIONALIZATION FOR PEOPLE WITH DEMENTIA

Deinstitutionalization offers potential benefits for PlwD. One of the most significant advantages of deinstitutionalization is that it places a focus on the treatment a person needs instead of separating them from the rest of society [43]. Deinstitutionalization provides an opportunity for more family involvement, which can be particularly beneficial for PlwD who often require specialized care and support. Quality of life, for PlwD in institutional settings can be influenced by several factors including timely planning of discussions, recognition of end-of-life and provision of supportive care, coordination of care, effective working relationships with primary care, managing hospitalization, continuing care after death, and valuing staff and ongoing learning. This process not only enhances the quality of life for people with intellectual and psychiatric disabilities and prevents re-institutionalization, but it also results in substantial financial savings [44].

Community-based care options can potentially improve the quality of life for PlwD and are available in various forms. Care of Persons with Dementia in their Environments (COPE) program has reported positive immediate effects on caregivers’ well-being, marginal positive immediate effects on behavioral and psychological symptoms, and long-term effects on meaningful activity engagement among PlwD [41]. A meta-analysis has shown that coordinating interventions in dementia care has a positive impact on some outcomes, namely patient behavior (measured using the Neuropsychiatric Inventory) and caregiver burden [45]. Home and Community-Based Services support PlwD in multiple aspects of daily life including personal care, medication management, meal preparation, social engagement, and cognitive stimulation. Jansen et al. (2009) identified key themes—service availability and acceptability—while exploring formal care providers’ perceptions of home- and community-based dementia care. Regional variations in accessibility were noted, emphasizing the need to tailor services to PlwD’s specific needs. By incorporating formal care providers’ insights, an integrated dementia care approach could reduce costs and improve the quality of life for individuals and their caregivers [46]. Research has uncovered formal care providers’ perceptions of home- and community-based dementia care in Canada, revealing significant challenges in service availability and acceptability, including waitlists, inadequate training, lack of infrastructure, socio-cultural and geographic barriers, fragmented care systems, and financial costs. Low and Fletcher (2015) found that case management for PlwD may increase the use of community-based services and delay nursing home admission and that integrated care was associated with greater client satisfaction, increased use of community-based services, and reduced hospital days [47]. However, the clinical impacts on PlwD and their careers are not fully known [48]. The effectiveness of community-based services for PlwD is promising but requires further research because the success of deinstitutionalization largely depends on the availability and quality of these services [46].

CHALLENGES AND CONTROVERSIES

Deinstitutionalization offers potential benefits for PlwD. However, it also introduces several challenges and controversies, particularly in terms of safety, caregiver burden, resource allocation, trans-institutionalization, and homelessness (Table 1).

Table 1

Challenges and controversies in deinstitutionalization for people with dementia

Challenges	Controversies	References
Safety	People living with dementia (PlwD) are vulnerable to abuse, safety hazards at home, and dangers outdoors due to symptoms like confusion, memory loss, disorientation, limited mobility, and coordination, but the goal of reducing exposure to harm is at odds to personal autonomy.	[49, 50–54]
Caregiver Burden	Deinstitutionalization pose significant challenges for caregivers, leading to physiological and cognitive health effects, economic hardships, and a need for comprehensive support and interventions.	[19, 55–60, 62, 63]
Resource allocation	The shift from institutional care to community-based services necessitates equitable and effective distribution of resources. This involves financial resources, human resources, such as skilled care providers, and infrastructural resources. The societal stigma attached to dementia often results in social exclusion, further complicating resource distribution or less use of services.	[2, 61, 64, 65]
Trans-institutionalization	As a consequence of deinstitutionalization, trans-institutionalization in dementia involves cycling individuals through various settings due to inadequate community services. This process negatively impacts the quality of life of individuals and their families.	[66, 67]
Homelessness	Homelessness in dementia, a potential outcome of deinstitutionalization, leaves individuals vulnerable due to inadequate housing and support services. This situation negatively impacts the quality of life of individuals and their families and necessitates effective resource allocation and policy implementation by public administration.	[68–70]

Safety may be compromised by symptoms of dementia such as confusion, memory loss, disorientation, limited mobility, and coordination, or by environmental changes. People living with dementia are particularly vulnerable to abuse [49] by those close to them and those they depend on, whether in a residential or home setting [50, 51]. Furthermore, PlwD may be more exposed to safety hazards in specific areas at home, such as entrances, interior stairs, bathrooms, and areas with physical barriers to mobility [52]. The outdoors can present significant risk to PlwD. Despite the limited research on the specific circumstances surrounding the deaths of PlwD, Rowe et al. have disclosed that 87% of PlwD who died after becoming lost were found in secluded, natural areas [53]. It is worth noting that, while 87% of those found alive were within a 5-mile radius of their last known location, 73% of those found dead were within just a half-mile radius [54].

Deinstitutionalization in PlwD presents significant challenges for caregivers, both professional and informal, resulting in a considerable burden. This burden manifests in various forms, including adverse physiological and cognitive health effects such as anxiety disorders and depression as well as lower rates of physical inactivity, poorer diet, and insufficient sleep [19 , 55–58]. The level of burden varies widely among caregivers and is primarily predicted by the duration of caregiving and the dependency level of the PlwD [56]. In addition to health impacts, caregivers often face economic hardships due to the substantial time and resources dedicated to caregiving duties, which can sometimes lead to reduced work hours or job loss [37 , 40]. The duration of caregiving and the dependency level of the PlwD are critical determinants of caregiver burden, with longer care durations and higher dependency levels correlating with the increased burden [37, 40]. Scientific literature underscores the significant challenges posed by the process of deinstitutionalization in PlwD for both professional and informal caregivers. These findings emphasize the critical need for comprehensive support and interventions to alleviate the caregiver burden in the context of dementia care [59, 60], especially when many caregivers are not using support services, primarily due to a perceived lack of need or lack of awareness [61]. Interventions aimed at alleviating the burden should be tailored to the illness trajectory of specific diseases and the corresponding needs for social support for both the recipient and the caregiver [43, 44].

Resource allocation across the dementia spectrum is a complex issue in the context of deinstitutionalization. Several critical aspects of community care could lead to inadequate or inappropriate care if policymakers and service developers do not give them due consideration [64]. The transition from institutional care to community-based services necessitates the equitable and effective distribution of resources. These resources include financial resources, human resources such as skilled care providers, and infrastructural resources like accessible healthcare facilities [65]. The complexity of resource allocation is amplified by the varying needs of PlwD, whose conditions can range from mild cognitive impairment to severe dementia. Each phase requires distinct levels of care and support, thereby posing a challenge in resource distribution. Moreover, the societal stigma associated with dementia often results in social exclusion, further complicating resource distribution [65]. Many countries struggle to make progress and consolidate in the deinstitutionalization process due to challenges such as stigma, a shortage of specialized human resources, and limited political and budgetary support [2]. Implementing deinstitutionalization requires a multifaceted strategy, strong leadership, diverse stakeholder participation, and long-term political and financial support [2]. Therefore, a comprehensive understanding of the needs of individuals at each stage of dementia is crucial for effective resource allocation. This understanding will facilitate the provision of person-centered care and support the goal of deinstitutionalization by enabling PlwD to live in their communities for as long as possible [65].

Trans-institutionalization, the process of moving individuals from one institutional setting to another, such as from psychiatric hospitals to nursing homes or prisons, poses a significant challenge in the context of deinstitutionalization [66]. This process, often resulting from the lack of suitable community-based services and supports, leads to the cycling of PlwD through various institutional settings. Given the factors associated with institutionalization in PlwD [23, 24], trans-institutionalization underscores the urgent need for the development and implementation of comprehensive, community-based services and supports. These services would not only prevent the cycling of these individuals through various institutional settings but also enhance their quality of life and ensure their safety and well-being [25]. Addressing the issue of trans-institutionalization requires a multi-faceted approach. It is essential to consider the impact on the quality of life of PlwD and their families. The role of public administration is crucial in this regard, as it is responsible for providing adequate resources and implementing effective policies. Research has shown that interventions such as the provision of home-based care, caregiver support, and community-based services can help prevent trans-institutionalization [67]. However, further research is needed to identify the most effective strategies and to ensure their widespread implementation.

Homelessness is another potential outcome of deinstitutionalization, leaving PlwD vulnerable due to a lack of adequate housing and support services. The complex needs of PlwD often make it challenging for them to navigate the housing system and access necessary support [68]. Research has indicated that homelessness constitutes a traumatic period that adversely impacts health and quality of life outcomes [69]. The relationship between homelessness and dementia is complicated because other chronic conditions or disorders may come into play. However, current research suggests that homelessness is a risk factor for dementia [68]. Research has shown that interventions such as creating space ownership in shelters and community facilities among seniors, hiring diverse staff members, supporting community engagement of seniors, and designing a housing framework can help prevent homelessness [70]. However, further research is needed to identify the most effective strategies and to ensure their widespread implementation.

As we continue to navigate the challenges and controversies of deinstitutionalization, we must remain committed to addressing the issues of safety, caregiver burden, resource allocation, trans-institutiona-lization, and homelessness through research, policy, and practice.

BEST PRACTICES AND INNOVATIVE MODELS

Best practices and innovative models in dementia care have been developed to support PlwD within the community and reduce the need for transition to residential care facilities. These models strive to balance deinstitutionalization with the provision of appropriate care for PlwD. This includes the deployment of interdisciplinary teams, proactive care management, managing psychological and behavioral issues, family caregiver support, and connections with community-based support services [71]. The principles and practices of quality care for PlwD encompass a person-centered focus, assessment and care planning, medical management, information provision, education and support, dementia-related behaviors, assistance with activities of daily living, a supportive and therapeutic workforce environment, transition and coordination of services, detection and diagnosis [72].

One example is the “Living Better at Home” project, which aims to enable older people, including PlwD, to continue living at home with their family and community [73]. This project is being implemented in two long-term care homes in Navarra, Spain, and has been registered in Clinical Trials (NCT05605392). It consists of two phases. The first phase has a cross-sectional design with the dual aim of identifying residents willing to be deinstitutionalized and studying prognostic and determining factors for a resident to be a candidate for a safe deinstitutionalization. These residents will be the recipients of the intervention in the next phase. The second phase employs a complex interventional design to implement a deinstitutionalization process conducted on an individual basis for the selected institutionalized older adults identified in the first phase. Another model is the dementia village, also known as the Hogeweyk Care Concept, which was first developed in the Netherlands. This model provides a community setting where small groups of residents with similar lifestyles and interests share townhouse units [74]. Another innovative approach involves the use of telehealth communications and monitoring technologies. These technologies improve access to health care for people living in residential aged care, at home without transport, or in rural/remote regions. Similarly, remote support systems, also known as ‘health smart homes’, are particularly beneficial for independently living people who are susceptible to falls or isolation [75]. These innovative models not only address the physical and psychological challenges associated with dementia but also foster an enriching community environment that allows PlwD to maintain a meaningful life. By focusing on optimizing the quality of life, functional independence, health, and safety and providing caregiver support, best practices and innovative models in dementia care are promising in improving outcomes for PlwD living in the community.

ETHICAL CONSIDERATIONS

The ethical considerations surrounding the autonomy and decision-making capacity of PlwD in the context of deinstitutionalization are complex and multifaceted. Dementia often leads to a progressive loss of cognitive abilities, including decision-making capacity [76]. This progression raises ethical dilemmas about balancing respect for autonomy with the need for care and protection to ensure their safety and well-being of PlwD [77].

The principle of autonomy, a cornerstone of medical ethics, asserts the right of individuals to make decisions about their own care. While deinstitutionalization aligns with this principle, it introduces challenges stemming from the impact of dementia symptoms on safety, such as confusion, memory loss, and disorientation [76]. This situation creates a tension between respecting the autonomy of PlwD and recognizing the gradual erosion of their decisional capacity, all while adhering to other fundamental ethical principles such as beneficence, justice, and nonmaleficence [78].

The principle of beneficence, which is focused on promoting the well-being of the individual, plays a significant role in this ethical discourse. Deinstitutionalization has the potential to enhance the quality of life by facilitating a more homely and less restrictive environment for individuals [79]. Nevertheless, concerns arise regarding the ability to provide adequate care and support in a community setting [80]. Nonmaleficence, emphasizing the principle of “do no harm,” is also pertinent in this context. While deinstitutionalization may offer benefits, it carries inherent risks such as insufficient care or support, social isolation, and an increased burden on family caregivers [54, 55]. Justice, as a crucial ethical consideration, revolves around ensuring that PlwD have equal access to care and support services, irrespective of their living arrangements in an institution or the community [78]. Despite the alignment of deinstitutionalization with the principle of autonomy and its potential benefits for PlwD, it poses significant ethical challenges. These challenges encompass the delicate task of respecting autonomy while acknowledging diminishing decisional capacity, all the while continuing to provide care in accordance with other core ethical principles. These complexities underscore the need for a nuanced ethical framework that considers the unique circumstances of each individual undergoing the process of deinstitutionalization.

Exploring alternative models to institutional living for PlwD introduces numerous ethical considerations that further enrich the discourse. Models such as dementia villages, home-based care, and smart homes equipped with technology pose unique ethical challenges and opportunities. Dementia villages [74], designed to create a supportive environment that mimics a traditional community, raise ethical questions about the degree of autonomy within a structured environment. While these settings aim to enhance quality of life, concerns may arise regarding the potential for unintentional isolation or limitation of individual freedoms. Home-based care [73], which allows PlwD to remain in familiar surroundings, emphasizes autonomy but may encounter ethical dilemmas related to the adequacy of care, potential caregiver burden, and the availability of necessary support services. The ethical implications also extend to issues of privacy, as the home environment may lack the anonymity provided by institutional settings. Smart homes [75], leveraging technology for monitoring and assistance, introduce ethical concerns related to privacy, consent, and the potential for dehumanization. Achieving the appropriate balance between utilizing technology for improved care and preserving the dignity and autonomy of individuals becomes a critical ethical challenge. In summary, while deinstitutionalization aligns with the principle of autonomy and has potential benefits for PlwD, it also presents significant ethical challenges. These include respecting PlwD’s autonomy while acknowledging progressively diminishing decisional capacity and continuing to provide care under other core ethical principles. Each alternative model to institutional life has its own set of ethical considerations that need to be carefully weighed. It’s crucial to involve PlwD, their families, and healthcare professionals in these discussions to ensure that the chosen care model aligns with the individual’s values and preferences while also providing the necessary care and support.

FUTURE DIRECTIONS

In the field of dementia care and deinstitutionalization, future research and policy development should focus on several pivotal areas, according to the Global Dementia Observatory (n.d.).

Firstly, a deeper understanding of the intricate needs of PlwD is paramount. This understanding necessitates research that considers the impact of diverse social, economic, and cultural factors within each country’s context. Secondly, the development and coordination of comprehensive dementia programs through a multisectoral approach are also crucial. Such programs can facilitate the recognition and effective address of the complex needs of PlwD. At the ministry level, dementia should be given higher priority, which includes the development or updating of national policies, strategies, plans or frameworks for dementia. These can either stand alone or be integrated into other policies/plans.

Furthermore, the allocation of funding towards the implementation of dementia plans and legislation related to dementia should be increased. This will ensure that sufficient resources are available for effective dementia care. Moreover, workforce development is another critical area, especially in the post-COVID era. Maintaining an adequate and high-quality workforce for residential and community-based care has become a pressing issue.

Public health policies for the recruitment, training, and retention of the dementia care workforce need to be fortified. This includes expanding the pool of health and social care professionals, including direct care workers, who are equipped with the necessary skill sets to effectively work with this population [81]. Similarly, the anticipated demographic changes over the next several decades, related to population aging and the increasing number of potential family caregivers, present significant challenges for the care of PlwD [82]. As the proportion of older people increases globally, there is an urgent need to reform health systems to meet the growing demand for medical resources. Approximately 17% of the population in Europe and 18.2% in the U.S. [83] are responsible for providing long-term care to older and disabled relatives. These demographic shifts may increase the demand for health and social care, thus increasing the number of family caregivers needed.

In addition, public long-term care financing must be restructured to support the provision and expansion of community-based services for PlwD. Rigorous public monitoring of quality to support improvement across the long-term care continuum is also needed. Lastly, people with lived experience of dementia should be involved throughout the research development process. Their insights can provide invaluable perspectives that can enhance the relevance and applicability of research findings. All the policies must consider not only PlwD but also caregivers as a cornerstone in good care and the appropriate use of different resources in a dynamic manner through the course of life.

It is important to note that deinstitutionalization policies are influenced by the welfare state models of each country. These models can impact social services policy, the status of informal care, the emphasis on community care, and funding. For instance, countries with a strong welfare state model may have more robust social services policies that support deinstitutionalization, including better funding for community care services. On the other hand, countries with a weaker welfare state model may rely more heavily on informal care, which could present challenges for deinstitutionalization. The emphasis on community care in different welfare state models can also influence the implementation of deinstitutionalization policies. Countries that place a high emphasis on community care may have more successful outcomes in deinstitutionalization, as they have the necessary infrastructure and support systems in place. Although a detailed analysis of these factors is beyond the scope of this article, we acknowledge their importance and suggest they be considered in future research. It would be beneficial to explore how differences in these models can lead to variations in the implementation and outcomes of deinstitutionalization policies. This could provide a more nuanced understanding of how specific national contexts can influence the care of PlwD.

Future research and policy development in the field of dementia care and deinstitutionalization should focus on understanding the complex needs of PlwD, developing comprehensive dementia programs, prioritizing dementia at the ministry level as well as at the regional and local level, increasing funding allocation, strengthening workforce development, retooling public financing of community-based services, improving quality, and involving people with lived experience of dementia.

CONCLUSION

The review of deinstitutionalization policies and their impact on dementia care reveals a complex landscape. Deinstitutionalization, which advocates for the transition of individuals from public or private institutions to community-based homes, has potential benefits for PlwD. However, it also presents several challenges and controversies, particularly in terms of safety, caregiver burden, and resource allocation.

The historical trajectory of deinstitutionalization has significantly influenced current approaches to dementia care. However, PlwD often face barriers when it comes to being considered for deinstitutionalization. These barriers include stigma about dementia, poor engagement in and access to healthcare for PlwD, inadequate linguistic and cultural validation, a limited dementia-capable workforce, competing healthcare system priorities, and insufficient health financing.

The findings from this review have significant implications for future research and policy development in the field of dementia care and deinstitutionalization. Future research should focus on understanding the complex needs of PlwD within the context of each country, developing comprehensive dementia programs through a multisectoral approach, prioritizing dementia at the ministry level, increasing funding allocation towards the implementation of dementia plans and legislation related to dementia, strengthening workforce development, retooling public financing of community-based services, improving quality, and involving PlwD.

In terms of policy implications, there is a need for a balanced approach that respects the autonomy and preferences of PlwD while ensuring their safety and well-being. This includes developing or updating national policies, strategies, plans, or frameworks for dementia, either stand-alone or integrated into other policies/plans. Moreover, public long-term care financing must be restructured to support the provision and expansion of community-based services for PlwD.

In conclusion, while deinstitutionalization policies have significantly evolved and have influenced current approaches to dementia care, there are still significant challenges that prevent PlwD from fully benefiting from these policies. Addressing these challenges is crucial for improving the quality of life and care outcomes for PlwD who wish to live in the community.

AUTHOR CONTRIBUTIONS

Nuria Carcavilla-González (Conceptualization; Data curation; Formal analysis; Funding acquisition; Investigation; Methodology; Project administration; Resources; Supervision; Validation; Writing – original draft; Writing – review & editing); Gema Escalada San Adrián (Conceptualization; Investigation; Writing – review & editing); Eduard Minobes-Molina (Conceptualization; Data curation; Writing – original draft); Sandra Pamies-Tejedor (Conceptualization; Investigation; Resources); Victoria Roncal-Belzunce (Conceptualization; Supervision; Writing – original draft); Laura Atarés-Rodríguez (Conceptualization; Data curation; Resources); José Augusto García-Navarro (Conceptualization; Resources; Supervision; Validation; Writing – original draft; Writing – review & editing).

Footnotes

ACKNOWLEDGMENTS

The authors have no acknowledgments to report.

FUNDING

This work was supported by the Next Generation European Union funding under the project “Living Better at Home”.

CONFLICT OF INTEREST

Nuria Carcavilla-González is an Editorial Board Member of this journal but was not involved in the peer-review process of this article nor had access to any information regarding its peer-review.

The authors have no conflict of interest to report.

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