Ho R, Fu K. Beyond the surface: looking towards japan for the future of dementia care. HPHR. 2023;78. https://doi.org/10.54111/0001/ZZZ1
As an estimated 10 million new cases of dementia occur globally each year, caregiving strategies must be adapted to better address the unmet emotional and instrumental needs of older adults living with dementia. In August 2022, we visited nursing homes and care facilities in Japan to understand the lived experience of older adults with dementia. Conversations about daily living revealed the detrimental impact of societal stigmatization on the quality of life of older adults living with dementia, an issue overlooked within the current field. We observed tangible approaches to tackling this issue in three Japanese care homes, which implemented destigmatizing strategies such as dementia-friendly spaces, human-centered care, and intentional meal preparation. Applying these person-directed care strategies in our interactions and gaining insight into caregiver experiences highlighted the potential for global implementation of destigmatizing practices. By addressing various social barriers faced by older adults living with dementia, these practices serve as a framework to systemically destigmatize dementia and improve the lived experience of older adults living with dementia worldwide.
Healthcare providers diagnose over 55 million older adults with dementia worldwide,1 leading the World Health Organization to create a Global Action Plan in 2017 on the public health response to dementia for countries to design national policies around by 2025.2 Japan has been at the forefront of dementia care and awareness, introducing their own national plan in 2015.3 As a super-aged society, with 28.2% of the population aged 65 and older,4 and projections that 1 in 4 Japanese citizens will develop dementia by 2045,5 Japan has been diligent in developing ways to better identify and address the needs of older adults with dementia. Our discussions with innovators and healthcare entrepreneurs emphasized addressing visible symptoms of dementia through technical products. However, in visits to nursing homes and care facilities in Japan, caregivers and older adults living with dementia emphasized an overlooked need within dementia care: reduction of societal stigmatization, something challenging to address with technical devices. Societal stigmatization of dementia exacerbates social exclusion and low self-esteem, creating an invisible mental and emotional burden for older adults living with dementia. Therefore, we explore the global value of community-based programs, inclusive practices, and human-centered care currently operating in Japan.
Fukasawa-san is an 89-year-old male with mid-to-late-stage dementia resulting from Alzheimer’s Disease, exhibiting limited mobility, agitation, and progressive memory loss. He lives at home under the primary care of his 84-year-old wife, who expressed interest in his transition to a nursing facility. However, Fukasawa-san perceives nursing homes as controlled environments full of judgmental strangers and caregivers who do not understand his needs, a sentiment shared by many older adults we met in Japan living with dementia. Dementia is highly stigmatized despite its pervasiveness, stemming from a lack of awareness that dementia is not a normal process of aging, but rather a terminal neurological syndrome resulting from abnormal changes to the brain.6 In Japan, older individuals living with dementia are colloquially referred to as “boke,” which translates to being helpless.7 Portrayals of senility are pervasive even within the elderly community and among older adults with varying stages of dementia, fueling social isolation and feelings of inferiority. The loss of independence, respect, and humanity associated with dementia underlies the necessity of addressing societal stigma to fulfill the unmet instrumental and emotional needs of older adults living with dementia.8
Our first visit began at the Ginmokusei Funabashi Nursing Home, which cares for approximately sixty elderly residents. The Ginmokusei Funabashi Nursing Home challenges the notion of nursing homes as sterile, prison-like environments envisioned by many individuals like Fukasawa-san. The idea of “peaceful community living” is enhanced by the large windows, blooming plants, ample sunlight, and wooden architecture. Communal living and eating areas are filled with musical instruments, books, and cooking spaces to cultivate stimulation and social interaction. Furthermore, residents are encouraged to personalize their rooms with furniture and memorabilia from home. We visited the room of a married couple, both of whom were over 90 years old and had mid-to-late-stage dementia. Their room was a near replica of their previous homes, down to the side-by-side beds that allowed them to continue to go to sleep while holding hands every night. The Ginmokusei Funabashi Nursing Home also combats the social exclusion that older adults living with dementia commonly face by operating a traditional candy shop at its entrance. Residents are invited to help customers and work at the store, challenging disparaging notions of ineptitude associated with individuals with dementia.
A caregiver stressed that these interactions humanize dementia and allow older adults living with dementia to hold meaningful conversations and perform work-related tasks. Therefore, the candy shop is a communal space where residents and local community members can naturally interact, facilitating interactions beyond staff and visiting family. This integrative approach exemplifies the global shift towards establishing dementia-friendly communities. This effort is promoted by the World Health Organization, which launched a Global Action Plan to bolster dementia education and inclusivity to foster dignity, support, and an understanding of individuals with dementia.1 This style can be extended outside of Japan, as evidenced by retirement villages such as the Selwyn Village in Auckland.9 Along with hosting numerous community-building activities such as weekly Friday dinners, residents are welcomed to work at the on-site gift store. Ultimately, the Ginmokusei Funabashi Nursing Home counters societal stigma surrounding nursing homes through adaptable practices that nurture face-to-face interaction with individuals with dementia.
Many older adults living with dementia experience a progressive loss of independence as their ability to perform activities of daily living declines. Societal perspectives exacerbate the misnomer that older adults living with dementia rely entirely on assistance from others. However, the Ginmokusei Funabashi Nursing Home understands the relationship between an individual’s selfhood and their sense of independence, thus limiting clear staff assistance to only when necessary. Staff encourage residents to continue activities of daily living. Residents may come and go from 9:00 a.m. to 6:00 p.m., with meals served during 2-hour periods three times a day. While residents set their schedules as they please, the staff continues to work behind the scenes to ensure their safety. For example, staff members may subtly follow residents who are prone to wandering on their daily walks and “coincidentally” bump into them to guide them back home when they appear lost. In addition, the staff members are attentive to changes in the residents’ behaviors. If a resident cannot sleep or frequently skips meals, staff members work alongside residents to formulate an individualized plan that accommodates their preferences. Residents reported greater happiness when living in a dementia-friendly space and voiced appreciation for their freedom while still receiving necessary support. In this way, the Ginmokusei Funabashi Nursing Home serves as a model to effectively address the physical and psychological needs of older adults living with dementia by emphasizing unstructured and personalized assistance in their work ethic and practices of care.
Dementia-friendly communities have grown in their implementation worldwide, as shown by the Hogeweyk, a dementia village in Amsterdam that mirrors an everyday neighborhood.10 Residents are free to visit restaurants, grocery stores, theatres, and stores staffed by cashiers and professionals trained to care for individuals with dementia.10 Like the Ginmokusei Funabashi Nursing Home, the Hogeweyk challenges traditional conceptions of confinement and limitation associated with nursing homes, allowing older individuals with dementia to continue to lead fulfilling lives.10
While common meal periods facilitate social interaction, older adults living with dementia who require meal accommodations may be ostracized by others within the community or feel constantly reminded of their condition. At the Gourmet Kineya Syakaikoken No Ie Nursing Home, meals are prepared according to five levels of swallowing and chewing ability. To reduce the “othering” of later-stage individuals, all five meals look and taste as similar as possible. Names such as “beauty” and “heart” identify each type of meal rather than “normal” and “special” to further reduce stigmatizing language surrounding varying levels of ability. Placing a special emphasis on crafting balanced meals based on traditional Japanese comfort foods and maintaining the same color and taste profile across all five levels of meal accommodation also tackles a common struggle of having to force-feed residents who refuse to eat. Some residents without the need for meal accommodation even requested softer meals purely out of preference. Caregivers also noted that residents with meal accommodations felt less self-conscious, encouraging them to eat with others. Recognizing and addressing the roots of exclusion in this way is crucial for the integration of older adults living with dementia.
Society is often quick to identify people by their illness or disability, resulting in care centered on visible physical needs. At Ikiiki Higashi Toyonaka Nursing Home, an individual’s humanity is emphasized by personal connections between staff and residents. This involves a holistic, human-centered approach that targets physical, mental, and emotional needs. In addition to providing necessary medical care, staff members facilitate friendship among residents by guiding group activities based on residents’ interests, such as baking cookies. In addition, the entrance features a candy shop, and the facility is supplied with toys and manga to welcome children from the surrounding neighborhood. This provides a reason to visit, embedding the nursing home and its residents into the community. Integration enables individuals to develop a realistic understanding of dementia apart from culturally transmitted stereotypes, while combatting the social isolation voiced by individuals with dementia.9 Residents shared feelings of belonging and acceptance among those within the nursing home and visiting locals, underscoring the value of acknowledging the mental and emotional needs of individuals with dementia.
This emphasis on applying human-centered care extends to visitors, allowing us to see its benefits in action. After a brief lesson on respect and etiquette (bending down to eye level when speaking to a resident, placing a hand on their shoulder to signal comfort and connection, and using animated facial expressions), we were paired with a resident. We applied the practices of human-centered care to introduce ourselves and join them with origami, piano, and coloring. Demonstrating our desire to engage in their hobbies and learn about their personal lives enabled us to build a foundation of trust. Despite having just met and lacking a shared language, they expressed that they felt comfortable with us joining them during teatime and helping them move around the home.
The Ikiiki Higashi Toyonaka Nursing Home’s employment of practical techniques that focus on forging meaningful interpersonal relationships and mutual trust represent tangible modes of applying human-centered care. Accounting for personhood, preferences, and lived experience through human-centered care has been increasingly valued as an effective method of upholding the dignity and fulfillment of older individuals with dementia. The 2018 Alzheimer’s Association Dementia Care Practice Recommendations outline the importance of understanding the point of view of older individuals with dementia to provide quality care.11 They note that person-centered care can reduce psychotropic medication use and behavioral symptoms and caregiver stress and burnout. Furthermore, establishing a culture of choice, self-expression, and a sense of community within the built environment is recommended to improve comfort and autonomy.
The World Health Organization’s Global Action Plan on the public health response to dementia aimed for 75% of its member states, or 146 countries, to enact a national plan by 2025 to improve the lives of people with dementia, their caregivers, and their families, while simultaneously decreasing the impact of dementia on them, their communities, and their countries.1 However, as of 2023, only Japan and 38 other World Health Organization member states have implemented national dementia plans.12 In the absence of such national policies, the strategies we observed in Japan offer a key foundation to improve dementia care, especially among low- and middle-income countries. At the core of each care facility was an emphasis on the individual with dementia, not just their visible physical symptoms. These human-centered care strategies can be applied globally across various cultures, socioeconomic backgrounds, and political environments. Adapting inclusive care practices to address the verbalized desires of older individuals with dementia for acceptance, inclusion, and independence does not require specialized equipment or extensive medical training. Rather, responding to societal stigmatization requires recognizing older adults living with dementia as deserving of targeted care that acknowledges shared human desires for social connection and respect. This holistic perspective shared by Japanese nursing homes, dementia-friendly villages globally, and person-centered public health guidelines is fundamental for structurally transforming dementia care. Therefore, we implore the prospering field of dementia research, care, and innovation to employ human-centered design that prioritizes the expressed, rather than assumed needs of older adults living with dementia.
Comprehensive care encompasses more than the treatment of symptoms and activities of daily living. Expressed by older adults living with dementia and their caregivers, human connection and respect represent fundamental aspects of quality of life that societal stigma may undermine. As stigma surrounding older individuals with dementia persists globally, practices to combat social exclusion within and outside of nursing homes are instrumental. Human-centered care and strategies to promote independence, community engagement, and dignity observed in Japanese nursing homes can be adapted according to various social and cultural contexts. Therefore, as we consider the future of dementia care, Japan can serve as a model to destigmatize dementia in the global community and improve the quality of life of older adults with dementia and their caregivers.
We would like to acknowledge Kanon Mori and the Japan-America Innovators of Medicine Program, Dr. Lené Levy-Storms, and Dr. Rachel Broudy for their support in this paper.
The authors have no relevant financial disclosures or conflicts of interest.
Katherine Fu is an undergraduate student at the University of California, Los Angeles. She is pursuing a B.S. in Psychobiology.
Reyna Ho is an undergraduate student at the University of California, Los Angeles. She is pursuing a B.S. in Integrative Biology and Physiology and a minor in Disability Studies.