What is Dementia?
Dementia is one of the most common memory disorders. There are approximately 50 million people with dementia globally (Thijssen et al., 2022). Dementia is an array of intricate progressive degenerative diseases that deteriorates a person’s memory, thinking, performance, and mood, and are often difficult to diagnose in the early stages. It is initiated by a variety of brain abnormalities. Häikiö et al. (2019) links dementia with old age; it can cause incapacitation and dependency. Dementia is associated with high healthcare burdens and a substantial impact on resources. To ensure adequate support and better quality of life for people with dementia, researchers recognize the vital role that the community can play in achieving patients’ physical, social, and health needs. The current article adopts a community perspective in the discussion on supporting people with dementia.
The Role of Community in Supporting People with Dementia
Meeting the needs of people with dementia is key to their general well-being. Failure to meet these needs has adverse impacts such as social segregation, early transfer to long-term care facilities, and caregiver exhaustion (Herron & Rosenberg, 2017). Herron and Rosenberg believe that community plays an important role in ensuring the inclusion of people with dementia in addressing vulnerability, stigma issues, distinguishing their uniqueness, providing suitable care, and recognizing dementia as a communal experience. This level of support can be achieved through creating dementia-friendly communities, using an integrated community approach, promoting community-based support, advocating for stakeholder linkages, and encouraging public participation.
Creating dementia-friendly communities
Creating dementia-friendly communities enhances social inclusion, integration, support, and access to resources for dementia patients and their families. Dementia-friendly communities can be achieved through education and awareness creation across all sectors of society to address vulnerability and stigma issues and facilitate social acceptance. According to Hung et al. (2021), purposeful engagement of people with dementia and their families or caregivers in meaningful interactions in the community can go a long way as a means of support. In doing so, people with dementia can be able to connect with the community and have a sense of belonging, aspects necessary for the improvement of individual and societal well-being, and better quality of life.
Important community changes that can better support people with dementia consist of constructing and designing dementia-friendly houses and public areas, traffic infrastructure, supportive technology, amenities and programs, and information and resources (Ang, 2020). The objective of such considerations and changes is to support people with dementia to live with dignity in the community for as long as possible.
Using an integrated community approach
An integrated community approach to providing care and support for people with dementia ensures unified support, harmonization, and steadiness across services, mutual decision-making, and continuous monitoring. According to Ang, integrated community support is receptive to the changing and multifaceted needs of people with dementia (2020). Additionally, it provides emotional and concrete support for dementia patients and their care providers at various levels. For instance, it incorporates the different support structures and personnel providing various care services for people with this condition (Ang, 2020). The utmost suitable expertise and resources are provided at the right time as needed by people with dementia. At the same time, it helps uphold their dignity, reduce their behavioral issues, and mend their mood.
Promoting community-based support
Community-based support for people with dementia recognizes both their needs and contributions. The approach keenly focuses on the position of dementia patients in the family and the broader complex system of care (Herron & Rosenberg, 2017). Besides services and needs, Herron and Rosenberg consider the role of social affiliations and cultural practices in informing the provision of services and people’s perceptions of people with dementia (2017). The authors recognize family, care institutions, and the community as the shapers of the kind of support that people provide, have, need, and use. Therefore, restructuring community organizations and services aimed at supporting people with dementia to have a wider community obligation potentially enhances the provision of support.
In addition, community-based support reduces the risk of harm as it addresses issues of food safety, falling, and movement safety among people with dementia. Although there is limited knowledge about practicing patient safety in the community setting, Häikiö et al. (2019) explain how preventive presence can help impede safety issues. Regular and continuous visits or presence among persons with dementia is an imperative protective and preventive measure against accidents at home, and in traffic, and ensures immediate assistance in case of any physical harm. The continuous presence of family and community members enhances the safe engagement of people with this condition in daily activities such as helping out with cleaning, organizing food, joint eating, and helping them move around.
Advocating for stakeholder linkages
Bringing together the various stakeholders in the community to mutually create all-encompassing environments improves the quality of life for dementia patients. The association of the different stakeholders in the community to support people with dementia is empowering. It is, however, important for stakeholders to understand approaches that enhance the effectiveness of all-encompassing environments and dementia-friendly communities (Hung et al., 2021). The most vital is the inclusion of the perspectives of people living with dementia. Additionally, Hung et al. (2021) advocate for empowering all stakeholders to harmoniously work together in ensuring social inclusion, community awareness, stigma reduction, and elimination of barriers in physical and social settings. Such empowerment has the potential to augment the positive experiences of the people living with dementia in the local communities.
Encouraging public participation
Allowing people with dementia to continue participating fully in society is another essential principle in creating inclusive dementia-friendly communities. The dynamic involvement of people with dementia and their caregivers in communal activities plays a vital role (Hung et al., 2021). The stakeholders in the local community share knowledge and experiences with people living with dementia and the subject matter experts. Hung et al. add that these interactive processes and interventions act as a way of imparting a sense of worth and independence to people living with dementia (2021). The approach progressively improves their general well-being as well as that of their informal caregivers.
What Factors Do Communities Need to Consider When Designing a Support System for People with Dementia?
For any community-based system to be effective in supporting people with dementia, it must recognize that these people come from different backgrounds. Their geographical and cultural environments vary. Hung et al. (2021) identify factors such as socioeconomic status, ethnicity, gender, and culture as potential influencers of the general experiences of people living with dementia.
Dementia-friendly community approaches should consider the specific needs of the different backgrounds and life experiences of people with dementia. For instance, the kind of community support and care needed by patients in urban areas may vary from that of a rural setting. It is empirical to customize the approaches and interventions for support and care based on the specific needs of both the community and individual patients.
According to Alzheimer’s Australia (2014), people with dementia have conveyed their enthusiasm to actively contribute and participate in society. The report also pointed out various barriers that limit their contribution and participation within their communities. The barriers can easily be eliminated through community awareness and understanding (Alzheimer’s Australia, 2014). When tailoring a support system for persons with dementia, it is more obliging for the community to understand and consider the influence of the condition on the individuals. This comprises understanding the way they think, feel, and behave.
Another factor to consider is the features of the community approach. Since people with this condition can live in their communities without greatly relying on institutional and medical support, it is apt for community interventions and approaches aimed to support the people to comprise non-medical features. According to Quinn et al. (2021), essential non-medical aspects that can enhance inclusivity and better living for people with this condition are support services, communal events and activities, and assisting them to participate in the community.
In addition, family support at home and the general improvement of the physical environment help to create a dementia-friendly community (Alzheimer’s Australia, 2014). Although, it is imperative to note that not all of these changes can be realized at the community level. Some require policy support and long-standing investment in infrastructure.
Dementia may lead to social segregation, stigma, early transfer to long-term care facilities, and caregiver exhaustion. The community setting determines the quality of life and the general well-being of people living with dementia. It can empower people with dementia by raising community awareness, improvement of support services and access, involvement in social events and activities, and enabling active engagement of the people in the community.
Support for people with this condition can be achieved through creating dementia-friendly communities, integrated community approach, community-based support, stakeholder linkages, and public participation. These five strategies are intertwined. An improvement in one aspect will consequently lead to the improvement of the others. However, it is important to understand that these strategies are designed based on the people’s attitudes, their backgrounds, and the availability of resources.
The role of the community in supporting people with dementia is to involve all stakeholders to create inclusive and dementia-friendly environments. The community and caregivers should also recognize that the most prominent issue is to understand and raise awareness about dementia. Awareness and understanding of the condition eliminate the vulnerability, stigma, and seclusion of people living with dementia and their families.