Providing ‘Just Enough’ Support for Individuals to Live Well with Dementia

Abstract:

Persons living with Alzheimer’s disease and related dementias strive to live well throughout the course of the disease. To contribute to well-being, caregivers (family and professionals) can use person-centered care, such as person-centered interventions and relationships, and promote living well. This article describes a conceptual model that addresses the interconnected concepts of person-centered care, living well, and well-being. Also, the concept of “just enough” support is examined, as are its implications to maximize independence and slow the rate of functional decline. Tips to provide “just enough” support are discussed to help sustain independence and function.

Key Words:

dementia, person-centered care, living well, well-being

Alzheimer’s disease is a progressive, degenerative disease, but persons living with dementia still want to live well. Living well with dementia differs for different people, but generally includes maintaining autonomy and independence. For many, this translates to receiving the right amount of support needed to be successful and function independently for as long as possible. With a focus on the perspectives of individuals with dementia, this article explores the interconnected concepts of person-centered care, well-being, and living well as a preview to examining the concept of “just enough” support to maximize independence and promote well-being.

Perspectives of individuals with dementia are sought through the published literature, and also via the authors’ discussions with the Alzheimer’s Association’s Early Stage Advisory Group (ESAG), which is made up of diverse individuals living with Alzheimer’s disease and related dementias or mild cognitive impairment. ESAG comprises 10 people in the early stages of dementia, plus their caregivers when appropriate, who are chosen through a nomination process. Formed in 2006, ESAG meets twice a year in-person and holds multiple virtual calls throughout the year. During these meetings, it provides a unique perspective to the Alzheimer’s Association’s key efforts, such as advancing public policy and enhancing care and support programs and services, as well as accelerating research.

Person-Centered Dementia Care and the Importance of Relationships

To ESAG members, the essence of person-centered care is to be seen as an individual. This includes receiving care tailored to individual preferences and needs while being treated kindly, and receiving clear acknowledgment that they are a person, and more than just the disease. Members also explained that engaging with and including those closest to them, such as family members, can be critical to person-centered care. Overall, person-centered care was seen as meeting the person living with dementia where they are in their journey and acknowledging their individual needs and preferences.

The views of the ESAG are well supported by the published literature, which offers multiple definitions and key components of person-centered care models. In 2013, Levy-Storms conducted a literature review of these models, looking for commonalities. Three components that were widely shared among models included: 1. supporting a sense of self and personhood through relationship-based care and services; 2. providing individualized activities and meaningful engagement; and 3. offering guidance to those who care for them. Also, valuing and respecting care providers is central to person-centered care (Brooker, 2004). In these ways, adopting person-centered care impacts not only the individual living with dementia, but also can lead to a shift in practice and culture within care communities and the larger community.

Underlying all person-centered care is the principle that people will be in a relationship with the person living with dementia. This means an ongoing relationship that exists not only while caring for them, but also with sufficient history that continuity of personhood is maintained. Some level of interdependence is a necessary condition of being human; however, “dependence” upon others is an even greater necessity for people with dementia, especially as the disease progresses (Kitwood & Bredin, 1992).

Even in the early stages, care providers are often physically and psychologically critical for helping the person maintain a sense of self. Over time, caregivers become even more of a necessity. Thus, while “personhood” is generally thought of as referring to a single individual, the “personhood” of living with dementia is inseparable from these critical relationships.

The personhood of individuals with dementia needs to be continually replenished, their selfhood continually evoked and reassured, which can be achieved through their relationships with others (Kitwood & Bredin, 1992). The other person, the care partner or caregiver, is needed to offset degeneration and fragmentation and sustain personhood. The farther the dementia advances, the greater the need for “person-work.” The caregiver is needed to hold the pieces together, “stand in” as the person’s memory, and provide personalized support. The caregiver can become the “prosthetic memory” and fill in the pieces or initiate discussions of memories (Fazio, 2008). In this way, Kitwood & Bredin (1992) argue that personhood in dementia can be ensured and understood only within the context of mutually recognizing, respecting, and trusting caregiver relationships. Care partners or others need to be the support that maintains the self, in part by structuring the environment and the interactions within it to do so effectively. Knowing the person well is central to care based on mutual trusting and caring relationships and can ultimately promote living well.

Living Well

Living well with dementia means finding ways to promote well-being and quality of life for those individuals affected by the disease. It acknowledges that individuals can continue to enjoy positive emotions and experiences in life as they move through the changes occurring (Alzheimer’s WA, 2022). Clare et al. (2014) developed a framework that recognizes different potential approaches for living well, based upon an individual's strengths, resources, physical, social, psychological, environmental, and financial capital. Adaptation is a critical component of the model, and includes practical strategies (e.g., modifying tasks), social strategies (mobilizing support), and psychological strategies (modifying expectations).

Focus group interviews with persons striving to “live well” with dementia were conducted as part of a separate study designed to develop new measures of well-being (Molony et al., 2022). Living well means striving to maintain normal life while accepting and coping with day-to-day challenges that may require adapting activities, routines, and environments to reduce stress and optimize function. Taking part in activities that bring pleasure, focusing on the present, and making the most out of every day are strategies to enhance well-being and live well. When social, occupational, mental, or physical challenges threaten to overwhelm available coping reserves, individualized approaches are needed to support emotional equilibrium and restore holistic well-being, while allowing for independence and autonomy.

Recently, ESAG members shared their thoughts on living well with dementia. Staying involved in everyday activities was especially important, including being outdoors, volunteering, enjoying music, and spending time with people they care about and those who care about them. At the core of all responses was a similar, overarching theme: living well means making peace with the disease while maintaining some sense of normalcy in their day-to-day lives. The members expressed that the ability to be honest with themselves and those around them about their diagnosis and in turn feel accepted and understood is pivotal to living well with the disease. Knowing a loved one is taking the time to understand their new needs, while also supporting them in continuing to do the things they loved pre-diagnosis, helps to maintain their independence and sense of self and come to terms with the changes in their lives.

Well-being

Person-centered care seeks to increase opportunities for living well and for individual and family well-being. Healthy People 2020 defines well-being as a relative state where one maximizes physical, mental, and social functioning in the context of supportive environments to live a full, satisfying, and productive life (Office of Disease Prevention and Health Promotion, 2022). Well-being is multidimensional, includes subjective and objective components, and has a bidirectional relationship with health (World Health Organization, 2012).

Many authors have identified well-being indicators. Three broad scoping reviews of the lived experience of well-being in people with dementia elucidated four conceptual domains: emotional well-being, psychological well-being, social well-being, and life satisfaction (Clarke et al., 2020; Taylor, 2015; Wolverson, Clarke, & Moniz-Cook, 2016). Subdomains of psychological well-being included going beyond (hope, growth, meaning-making or spirituality and transcendence), agency and purpose, and positive sense of self. These correspond to several of the indicators of well-being cited in Kitwood & Bredin’s (1992) seminal work, including a sense of personal worth and self-respect, a sense of agency or control, social confidence (being at ease with others and having something to offer them), and hope.

While emotional, spiritual, psychological, and social well-being typically are included in conceptualizations and measures of well-being, physical and cognitive well-being often are characterized in terms of objective function, rather than as parts of a holistic experience affecting every day. People striving to live well with dementia talk about having “good days” or “foggy days” in terms of mental clarity, and this experience shapes the experiential possibilities for that particular day. In this way, it may be more important to consider the individual’s subjective experience of cognitive well-being, than objective scores on measures of recall, executive function, or visuospatial ability. Similarly, typical measures of activities of daily living (ADLs) and instrumental activities of daily living (IADLs) may not fully convey the frustration experienced when there is a disconnect between the person’s intention and the challenges encountered when striving to enact those intentions.

In discussions with ESAG members, different types of support were needed to achieve well-being, especially in relation to the social domain of wellness. One important form was engaging in shared activities, such as watching a local football game together or getting the same tattoo. Such every day, shared activities made the person with dementia feel comfortable, safe, and engaged. They also showed commitment and connectedness to one another while maintaining a sense of independence. Support and encouragement within the workplace also was reported to improve well-being. One member’s boss began making small adjustments to her job duties when he began to notice cognitive changes. This “silent support” through small accommodations helped the person with dementia to maintain independence, confidence, and a sense of purpose.

Promoting Person-Centered Care to Live Well and Promote Well-Being

Figure 1, below, displays the conceptual model of the interconnected nature of person-centered care, living well, and well-being. The model shows how receiving person-centered care impacts the ability of the person living with dementia to live well, which in turn affects the person’s well-being.

Figure 1. Conceptual model for living well with dementia

Source: Alzheimer’s Association.

Several themes in research have shown promise for outcomes associated with living well and person-centered care, including psychosocial interventions, technological integration, and social and built environments. In their 2015 systematic review, Gitlin and Hodgson found an emerging evidence base for a range of interventions that improve caregiver well-being while also affording positive benefits for people with dementia, including reductions in functional dependence, behavioral symptoms, and nursing home placement.

Functional decline that results in dependence is caused in part by neuropathological changes, but contextual factors also play a role. For example, cluttered, loud, or poorly lit environments; information that is communicated ineffectively; lack of structures to support medication management; and overly complex tasks all may increase challenges for people living with dementia (Gitlin et al., 20216. These contextual factors are modifiable and can be personalized, such that using person-centered care can help to alleviate the impact of them.

Available evidence suggests that several types of interventions are modestly beneficial in ameliorating functional decline. These include occupation-based and cognitive interventions; physical activity that features aerobic exercise, resistance training, or flexibility training (or activities combining all three); modification of the home environment; and family caregiver skills training. Approaches that provide education for care partners also show promise, especially when they equip caregivers with strategies for managing behavioral challenges, maintaining physical activity, and modifying the home environment (Gaugler et al., 2020).

Technological assists, such as monitoring technologies, assistive devices, therapeutic devices, and caregiver supportive technologies also seem promising for supporting these individuals (Moyle, 2019). Many of these technologies (e.g., smart home technologies; artificial intelligence [including the internet of things]; wearable devices that monitor activities; robotics; medication reminders) are most appropriate for those in the early stages of disease. But some of these technologies facilitate physical functions, such as feeding and transferring from bed to chair, and may be helpful for individuals in more advanced stages (Gitlin et al., 2016).

Sturge et al. (2021) recently summarized findings from 23 qualitative articles on how social and built environments contribute to the well-being of home-dwelling people with dementia. Two themes were identified: 1. connection to society and supportive relationships; and 2. interaction with natural environments and public space. Despite challenges associated with dementia, access to social and built environments contributes positively to the well-being of people with dementia who live at home. However, when individuals experience stress and challenges within these environments, these interactions can negatively impact well-being. The researchers suggest that greater awareness of the impact of the environment can improve interactions with public spaces, mitigate stigma, and enhance the social environment.

The popular concept of “social health” has been operationalized for people living with dementia and includes three dimensions: 1. fulfilling one’s potential (e.g., through work or volunteering); 2. managing one’s life with some degree of independence (e.g., taking a walk alone); and 3. participating in social activities (e.g., meaningful activities and social interactions) (Dröes et al., 2017; Vernooij-Dassen & Jeon, 2016). Gitlin et al. (2016) suggest that the concept of social health in dementia centers on the capabilities of the person and how they impact their opportunities for social engagement.

Providing “Just Enough” Support

“Just enough” support means to offer the right amount of assistance to maximize independence and decrease functional decline. Modulating the quality and quantity of support in a way that empowers the person requires knowing the person. This type of dynamic, relationship-enabled person-centered care supports living well, leading to well-being. Understanding the person means that caregivers can define what “just enough” support means for each individual, allowing them to function as independently as possible for as long as possible. Figure 2, below, shows how “just enough” support arises from the personalized knowledge base of person-centered care, and how it promotes living well, which leads to well-being.

Figure 2: Conceptual model for living well with dementia and providing “just enough” support

Source: Alzheimer’s Associatio

Figure 3, below, depicts how “just enough” support maximizes independence in the face of functional decline. Too much or too little support, on the other hand, can have unintended outcomes. Too little can lead to frustration and giving up, whereas too much can lead to objectification and withdrawal. Neither the rate of functional decline nor the specific predictors of deterioration are well understood in relation to dementia (Gitlin, 2016).

For example, while the cognitive changes brought about by the disease increase the difficulty of performing everyday tasks, functional declines also may arise from comorbid chronic conditions, or even as an outcome of the process of aging (Gitlin, 2016). The individual and combinatory influences of these “intrinsic factors,” i.e., dementia, aging, and comorbidity can confound the etiology and pathways by which declines occur. The situation is complicated further by “extrinsic” factors, such as the physical and social environment, and task complexities and expectations (Gitlin et al., 2016). Thus, functional changes reflect the dynamical process of the interplay between “intrinsic” and “extrinsic” factors.

Figure 3. Conceptual model of providing “just enough” person-centered support

Source: Alzheimer’s Association

“Just enough” support recognizes that approaches need to be directed at the right combination of intrinsic and extrinsic factors to support best functioning, as functional levels change day-to-day and over time. These factors or combinations will differ not only between individuals, but also between physical and social environments for the same individual. “Just enough” support considers not only the challenges posed by dementia, but also maximizing overall health and caring for chronic diseases and pre-habilitation/rehabilitation to prevent excess disability related to aging or to treatments for acute or chronic illness. Considering all of these factors will contribute to the overall functional status of the person living with dementia. Gitlin et al. (2016) suggests that larger gains in functionality may be achievable in the early versus later disease stages, when neuroplasticity is reduced. But while opportunities for enhancements narrow over time, there remains room for improvement throughout disease progression.

Providing “just enough” support connects back to Levy-Storms’ (2013) three main principles of person-centered dementia care. The first principle of relationship-based support might include knowing the person well enough to recognize non-verbal signs of discomfort or frustration that indicate a need for more support. Additionally, it might include having a caring conversation that encourages the person with dementia to let the care provider know when they are feeling “over-supported.” This ties in nicely with ESAG members’ descriptions of how honesty and openness are necessary if caregivers are to meet them where they are in their journey. The second principle of individualized activities and meaningful engagement can include organizing the environment or modifying activities or schedules to match the person's best times of day with the most important activities. Lastly, caregivers can feel supported and seek guidance through educational opportunities. These principles help foster realistic expectations and nurture social health for both partners.

When asked about what “just enough” support means to them, ESAG members seemed to resonate with the concept. Important ways of providing support to them included caregivers educating themselves on the disease and care process, listening to their needs and preferences, making the effort to spend social time with them, and being empathic and patient. When discussing what “just enough” support looks like, many members included the importance of people wanting to be there for the person and providing help, rather than feeling obligated or not showing up to help. Likewise, “just enough” support avoided becoming overbearing, such as calling too often or sending too many research articles.

Using a person-centered approach is key to understanding what “just enough” support is for each individual. This conceptual approach takes advantage of relationships and interventions that would be most useful when providing care and support. Overall, by achieving “just enough” support, we can impact living well in people with dementia by slowing the rate of functional decline and increasing independence. Future research should examine this relationship to further understand the benefits of providing “just enough” support to people living with dementia.

Sam Fazio, PhD, is senior director of Quality Care and Psychosocial Research; Lauren Stratton, PhD, is senior associate director, Psychosocial Research and Program Evaluation; Chelsea Kline, MPH, is associate director, Center for Excellence, all at the Alzheimer's Association in Chicago, Illinois. Sheila Molony, PhD, APRN, FGSA, FAAN, is a professor of nursing at Quinnipiac University in Hamden, Connecticut.

Tips for Providing “Just Enough” Support

Providing the right level of support is key to sustaining independence and well-being, while too little or too much support can have significant and unintended outcomes. Consider the following tips when considering how much support is “just enough”:

• Know the person. It is essential to know about the person(s) you care for. Find out likes and dislikes, preferences, and strengths and abilities.
• Ask for preferences. Talk with the person living with dementia about their preferences. Have a conversation about certain situations and discuss how they’d like you to help.
• Consider your approach. Think about the spirit of your approach or intent of your actions. Be sure it is helpful and not overbearing. “Silent support” might work best in some situations.
• Modify tasks. Make adjustments to tasks to allow for success. The individual might need help with initiation, simplifying steps, or verbal cues or reminders. Find out what type of help they think will make them most successful.
• Organize the environment. Organize the environment, such as schedules, to match the person's best times of day with the most important activities.
• Start out small. Begin with minimal support and see how things go. If needed, add more support to allow for better success.
• Use trial and error. Don’t be afraid to try out something new as long as it’s supportive. If it doesn’t work, try something else, but always ask for feedback.
• Watch for signs. Look for nonverbal and verbal signs of discomfort or frustration that you might be providing too little or too much help.
• Evaluate and adjust. As always, it is important to continually evaluate and adjust approaches from one day to another, as the disease progresses and as interests and abilities change.

Photo credit: wong yu liang/Shutterstock

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