Dementia is a term that encompasses a wide range of neurological conditions, which are characterized by behavioral changes, disorientation, loss of memory, and difficulties in problem solving and thinking (Evans, 2018). One must note that dementias are progressive, which infers the fact that the chemistry and structure of the brain degenerate over time. While there are many other types of dementia, Alzheimer’s disease is the most common because it accounts for an approximately sixty percent of the dementia spectrum of disorders (Neville et al., 2015). Each form of dementia has its own unique neurological features and results in unique symptoms, but it is useful noting that regardless of the type of dementias that patients suffer from, the range of symptoms experienced are specific to each person.
The number of people in the populace affected by the dementia spectrum of diseases around the world was projected to increase from forty-seven million to seventy-five million between 2015 and 2030, and that the figure will hit a hundred and thirty million by 2050 (Evans, 2018). The incidence of dementia has resulted in a number of organizations, such as the EU and the World Health Organization, to recognize dementia as a public health priority globally. It is important to understand that ageism is the largest risk factor for the condition. For instance, the proportion of persons who develop Alzheimer’s disease before they are sixty-five years old is only five percent of the entire Alzheimer’s disease population. The incidence of the condition increases with ageism in all parts the world over.
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One of the most important findings of ageism and dementia is the fact that its incidence doubles with every 6.5 years for individuals in Central and West Europe, 5.5 years for persons in North America, 10.6 years for South Eastern Asians, and 6.6 years for those in South Asia (Passos, Sequeira, & Fernandes, 2018).
Issues that the Elderly Persons with Dementia Face
The relationship between ageism and dementia results in the double stigma of dementia. According to Evans (2018), the double stigma of dementia refers to the fact that persons living with the condition are more likely than others without the condition to experience the stigma, which is associated with the disease and the broader ageism humiliation. At a personal level, stigma is associated with a sense of dehumanization, shame, low self-esteem, as well as social isolation among affected persons. Presently, dementia does not have a cure, and there is no strong evidence supporting the effectiveness of treatments whose objective is to ameliorate patients’ symptoms (Evans, 2018). The idea that a cure is yet to be discovered, coupled with the rising levels of awareness of dementia and its effects, including memory loss, has resulted in significant fears among the aged of developing dementia, Evans (2018) notes. High levels of stigma related to dementia are one of the effects of the fears, and the growing voice of persons living with the condition is testament to the argument.
The relationship between dementia-induced stigma and ageist segregation is skewed. According to Boustani, Schubert, and Sennour (2016), substantial evidence argues for the existence of stigma towards dementia around the world. Boustani, Schubert, and Sennour (2016) further indicate that cultural factors could be critical. For instance, for some traditional Asian religious beliefs, the perceived causes of dementia could force some people into concealing their symptoms within their familial settings. Currently, there is a universal recognition of the need to lower dementia-related stigma as well as the negative connotations that are associated with Alzheimer’s disease and other conditions in the dementia spectrum.
Studies have established some of the most common negative emotions that are associated with the development of dementia among the aged. For example, according to Menna et al. (2016), the most prevalent emotions include disgust, humiliation, and shame. Importantly, the latter study reports that stigma could manifest in three phases. Self-stigma, the author note, is the self-internalization by persons of the reactions and ideas of dementia while public stigma is manifest in the reactions of lay individuals towards the stigmatized persons. Lastly, stigma by association infers the beliefs and emotions of the persons surrounding dementia patients, such as healthcare professionals and family members.
Stigma is considered to be pervasive, and its negative effects on the aged occur at four levels. At the individual scale, dementia-related stigma could result in feelings of humiliation and shame, like low self-esteem, and later, social isolation (Shefrin, 2018). The same study suggests that at the familial level, stigma could result in an increased burden of care, concealment, depression, and perceptions of moral failure. Stigma at the professional level could lead to delayed or differential diagnosis and treatment of the condition while at the societal level; the same stigma could cause institutionalization and reduced access to healthcare services. Fear and anger are found to be the central emotions that contribute to stigmatic behavior in respect to mental health illnesses, while for the case of Alzheimer’s disease, feelings of rejection abound, including impatience, shame, and ridicule.
While stigma could be most destructive on the patient, it is useful to consider the effect of such stigma on the families of the patients, who are in charge of the high levels of care that the patients always need to manage their daily activities. The familial role is critical in the maximization of quality of life for individuals with dementia while delaying transitions into institutional care. As much as family care is associated with several benefits, it should every that it also has a number of inherent challenges, such as economic burden, social isolation, and high-stress levels. Therefore, the provision of effective supports for carers, such as psychosocial interventions is critical in promoting the quality of life among persons with dementia, yet good quality supports are not always guaranteed. Combined with the aspect of stereotyping, stigma by association could result in double discrimination for elderly dementia patients and their families.
Developmental Needs for Old People with Dementia
The fact that stigma is prevalent among older adults living with dementia suggests that the primary developmental need among this group is emotional support, which will alleviate them of their stigma. A critical review of literature reveals different developmental needs for a person under the condition. However, an interpretation of the different needs revolves around the need to help them deal with the fear and stereotyping that is associated with dementia. Importantly, old people with dementia need help with adjusting to the realization that their condition is more likely to deteriorate than improve (Passos, Sequeira, & Fernandes, 2018). Physical health, psychological distress, memory management, access to information, hearing and seeing, and handling household chores are the most important developmental needs that literature identifies for the aged group with dementia.
A simplistic approach to understanding the identified development needs of elderly persons with dementia identifies four important domains of needs that are specifically important for addressing the stigma issues reported in the preceding section of this proposal. First, according to Shuman et al. (2017), old people living with dementia have the need to be heard. Dementia, as reported, contributes to low self-esteem, which infers a collection of feelings that reduce self-worth. Unless the patients receive the right support along the continuum of care that will allow them to express their emotions to the best levels that they can, self-stigma is likely to contribute to the degenerative effects of their condition. The patients will always want to find someone in whom they can confide, which is why they need to be heard.
The home-based model of care that proliferates geriatric healthcare models places family members at the center of caring for the elderly, which contributes to meeting their needs to be heard. Aged persons experiencing dementia also need to express their frustrations. According to Abdi et al. (2019), self-stigma causes feelings of humiliation, especially when patients learn that their condition will never improve, which comes with frustration. Having the right person to express such anger is one of the ways through which the models of care could intervene in the psychological wellbeing of old people suffering from dementia. The last two needs for this group are the need for them to tell their stories, and to have someone caring for them.
While the needs can be generalized as the preceding paragraphs have done, caregivers, including healthcare officials and family members, should understand that each of the patients has their unique needs. Therefore, the categorization reported is only acceptable when delivered in the patient-centered model of care that underpins Jean Watson’s Human Caring Theory. Both the model and the theory, literature reports, guide that caregivers formulate their strategies of care to address the specific needs of patients and that they avoid generalizing (Shuman et al., 2017). For example, while some patients will feel that their memory is good, others will want help in this domain, which is why special attention ought to be taken.
The Development Pathway for Aged People with Dementia: A Risk-Resilience Perspective
Resilience for dementia is one of the most important aspects that literature underscores. Most of the research on caregiving for older patients with dementia focuses on the adverse aspects of the care process, including the fact that stigma is hard to manage at all the four levels described in this literature (Gaugler, Kane, & Newcomer, 2017). However, a few researchers have focused on the methods of building resilience among older patients with dementia for both their condition and the levels of stigma that their ailment creates. Resilience is desired in the context of caring for patients because it provides the necessary uplifts in the continuum of care, which are likely to provide hope and contribute to a better quality of life among patients.
Ageism has been identified as the most important risk factor for developing dementia, and resilience should be built around improving the positive perceptions of the aged towards ageism and its association with degenerative disorders, including dementia. Resilience in ageism and dementia is reported in the reviewed studies to be associated with the propensity of caregivers to quit their roles or to continue in such roles. For a positive outcome, it is reported that the number of factors determine whether family members will continue their roles. According to Shuman et al. (2017), resources, care recipient status, and contextual factors are important in predicting the likelihood that caregivers will continue in their caregiving roles.
Contextually, caregivers living with disabled older patients, those on assisted care services, or those who had significant levels of cognitive impairment suffering from dementia are more likely than do those dealing with better patients to give up their caregiving roles, the latter study finds. Cultural factors are another element in the contextual continuum that determines resilience for caregivers handling older patients with dementia. Some cultural and ethnic backgrounds predict the probability that caregivers will develop resilience or that they would not. For instance, Caucasian caregivers depict lower levels of resilience towards dementia as caregivers than do their non-Caucasian counterparts although literature does not identify specific factors that lead to the reported differences in the levels of resilience (Shuman et al., 2017). On the contrary, African American and Latino minority groups are more likely to develop resilience than other racial groups.
Caregiver resilience has also been identified as one of the most important aspects in the development of patient resilience among older persons living with dementia. In this case, resilience among patients is perceived to be driven by the type of care that they receive from their family caregivers. In cases where such caregivers can stay longer and provide the services that will address the four categories of needs described previously, the higher the chances that patients will develop resilience. However, instances where low-resilient caregivers give up their roles imply that the patients will be left without the required care to address their needs, which breeds ground for the social stigma to influence their courses of development.
Resources also influence the development of resilience among older patients experiencing dementia and their caregivers alike. Different types of resources are required in caring for older patients in the geriatric model of care, including finances, medications, equipment, and other resource pools. In cases where caregivers do not have sufficient resources, they are likely to develop low resilience levels because they are likely to give up relying on aid and the need to involve others in managing the conditions of their patients (Evans, 2018). Coupled with the cultural perspectives among some patients that make them want to conceal their conditions, lack of resources is likely to create low resilience because of the fear of borrowing and revealing specific conditions of patients. On the contrary, a large resource base will always create autonomy among caregivers, which means that they will likely develop high levels of resilience and continue caring for the patients.
The patient-caregiver relationship is also another factor that determines resilience for both groups alike. One may predict with certainty that positive relationships increase the chances that both of them will become resilient towards dementia. Nevertheless, in case the relationships are restrained for any reason, both groups are likely to desire to quite the care context because of low levels of resilience (Abdi et al., 2019). Several factors, especially within the cultural sphere, impede the development of strong patient-caregiver relationships. In some cultures, the perceptions of patients towards autonomy will affect the levels with which they desire to be helped in managing some of the conditions that they feel they could have managed easily if they were younger. In addition, some patients may feel no need for plans of care because they know that they are unlikely to improve their conditions because dementia is a degenerative disorder. Therefore, it is always advisable that caregivers understand some of the factors that are likely to affect their relationships with patients before their plan for care if they are likely to build resilience both for themselves and for their patients.
The Prospect Theory and Care Interventions for Older Patients with Dementia
Developing resilience is the most desirable outcome of care for older patients living with dementia. While several factors describing the development of resilience for patients and caregivers have been outlined, it is important to contextualize them theoretically. The prospect theory, which literature also identifies as gains and losses model, provides an important perspective of the motivations to developing resilience. The theory is a behavioral model, which seeks to explain why people make specific choices at the expense of others. According to Shefrin (2016), the prospect theory holds that people weigh between their chances of success and failure (gains and losses) before deciding between alternatives. The theory predicts that individuals are always likely to choose alternatives with the best gains because they are inherently risk-averse.
The model, therefore, informs the way in which resilience builds among older patients with dementia and their caregivers. On the patient side of the continuum, it can be argued that they always want to improve the quality of their lives and extend their days to see the fruits of their years of laboring, which is why they seek medication. The patients could also be motivated by the need today respectfully and to avoid the agony of imposing psychological torture on their families that they create out of dependence because of ageism. On the caregiver side, it can be argued that they are motivated to prolonging the lives of their patients because they would like to share in their successes before they die out of old age. Therefore, the gains and losses theory can be applied in explaining how and why patients and caregivers develop high levels of resilience and not low resilience levels because from the theoretical perspective, both of them seek gains and discern losses.
Proposed Intervention for Resilience among the Aged Persons Living with Dementia
Literature proposes different types of evidence-based interventions for individuals experiencing dementia in their old age. One of the most commonly proposed strategies of caring for the aged persons with dementia is the utilization of intellectual, physical, and socialization activities (Ruthirakuhan et al., 2012). According to the cited literature, while the strategy proposed cannot effectively cure dementias (the condition is neuro-generative), they have been found to slow down the progression of a number of pre-dementia conditions, including Alzheimer’s disease. While there are a host of other strategies that literature recommends, social interaction, intellectual stimulation, and physical exertions produce better outcomes than the rest (Neville et al., 2015). In the past, as the latter study reports, the strategies were applied singly, but over the recent years, they have been used in combination.
Physical activity, for instance, is associated with numerous cardiorespiratory benefits, which are further associated with higher scores on cognitive functioning of individuals. For instance, in their meta-analysis, () discovered a positive correlation between physical exercise and cognitive functionalities, such as executive function, speed of processing information, attention, memory, and other functions. Recommending physical exercise, therefore, promises better health outcomes for the aged persons living with dementia because of its ability to check the rate of cognitive decline. A further review of the extant literature establishes a positive relationship between exercise and physical functionalities of the old, including walking and mobility, which is another issue associated with ageism.
Intellectual activity is proposed as an intervention in the management of age-related dementia because evidence associates it with positive cognitive functioning. For example, according to Ruthirakuhan et al. (2012), engaging in hobbies like playing puzzles, reading, listening to music, and watching television at least six hours a day lowers the incidence and risk of dementias. The same literature reports that the intervention has been identified with positive effects on cognitive decline in old age, which is why it is among the proposed strategies.
Lastly, studies, including Neville et al. (2015), associate socialization interventions with reduced levels of cognitive and physical functioning. As previously reported, dementias are associated with different types of stigmas, which create feelings of self-incompetence and societal stereotypes of ageism that may accelerate dementia. Nevertheless, socialization has the potential of dealing with ageism and dementia-induced stigmas. Combining the three strategies could have far-reaching positive effects on the aged persons suffering from dementia because they all have the capacity to lower the rate of cognitive degeneration.
References
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Boustani, M., Schubert, C., & Sennour, Y. (2016). The challenge of supporting care for dementia in primary care. Clinical Interventions in Aging , 2 (4), 631.
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Gaugler, J. E., Kane, R. L., & Newcomer, R. (2017). Resilience and transitions from dementia caregiving. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences , 62 (1), 38-P44.
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Ruthirakuhan, M., Luedke, A. C., Tam, A., Goel, A., Kurji, A., & Garcia, A. (2012). Use of physical and intellectual activities and socialization in the management of cognitive decline of aging and in dementia: a review. Journal of aging research , 2012 .
Shefrin, H. (2016). Prospect Theory’s Focus on Gains, Losses, and Framing. In Behavioral Risk Management (pp. 37-52). Palgrave Macmillan, New York.
Shuman, S. B., Hughes, S., Wiener, J. M., & Gould, E. (2017). Research on care needs and supportive approaches for persons with dementia. Retrieved from https://aspe.hhs.gov/basic-report/research-care-needs-and-supportive-approaches-persons-dementia
