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Independent of Formal Support; teamwork relationship with informal support, adaptive coping, and internal locus of control?these participants had some level of acceptance; greater propensity to anger/frustration and depression/sadness. The grayed out sections indicate areas of the model that do not apply to this interaction.
Source publication
Purpose of the study:
The emotional reactions to the progression of Mild Cognitive Impairment and Alzheimer's disease (MCI/AD) oftentimes present as cognitive or behavioral changes, leading to misguided interventions by Formal Support (paid health care providers). Despite a rich body of literature identifying cognitive and behavioral staging of MC...
Context in source publication
Context 1
... patients designated as independent of their Formal Support had developed a strategy for adapting to their current needs, an internal locus of control that allowed them to act on that strategy, and a "teamwork" relation- ship with their Informal Support Partner that supported their coping; however, they had low amounts of support from their Formal Support. These participants had some level of acceptance but had a greater propensity for anger/ frustration and depression/sadness (Figure 3 after being placed in a nursing home, dying around age 76. Mrs. Spears attributed this quick decline to a lack of adequate support from her brother's Formal and Informal Support Partners. ...
Citations
... and inform the development of behavioral health interventions for individuals with early stages of cognitive decline. 7 Neuropsychiatric symptoms, such as changes in emotion and behavior, are early indicators of subsequent cognitive decline. 10 Those with a diagnosis of MCI have been found to have changes in emotional wellbeing and social relationships. ...
Introduction:
Examining the emotional functioning of individuals with mild cognitive impairment (MCI) could help describe their cognitive status and inform the development of interventions. This study compared the emotional characteristics of socially isolated older adults with and without MCI.
Methods:
We used baseline data from the Internet-based Conversational Engagement Clinical Trial. Emotional characteristics were assessed with the National Institutes of Health Toolbox Emotion Battery (NIHTB-EB). MCI status was determined with a consensus clinical diagnosis.
Results:
This study included 163 participants (mean age = 81.2 years, non-Hispanic Black = 20.7%, MCI = 52.8%). MCI was associated with higher negative affect and lower psychological well-being. Non-Hispanic Black participants scored lower in sadness, higher in positive affect, and higher in meaning and purpose than non-Hispanic White participants.
Conclusion:
Older adults with MCI experience more negative emotions and worse psychological well-being than those with normal cognition. The NIHTB-EB appears to be a sensitive tool to detect emotional characteristics associated with cognitive decline.
... Although social support is important throughout the disease process, previous studies suggest that a strong social support network is most critical for combating distress while MM patients are in the hospital receiving transplant (24). Within the context of incurable illness, caregivers who gauge responsiveness without infantilizing, or treating someone as a child, are more likely to adapt to meet changing needs (37,38). Likewise, in the current study, patients typically voiced less distress when they had caregivers who acted in a supporting role, allowing for the patient to remain centered in their own care. ...
In the current study, we sought to examine whether patients incorporate the identity of a patient receiving autologous stem cell transplant (ASCT) for multiple myeloma (MM) into their daily lives. Multiple myeloma patients receive education before initiating the ASCT treatment process. In this ethnographic study using interpretative phenomenological analysis, we observed pretransplant education visits with 30 MM patients, followed by semistructured interviews in their hospital rooms during transplant. The experience of receiving ASCT for MM required effort by patients to not only maintain their past identity but also establish a new patient identity. Reconciling these 2 identities required deliberate and emotionally draining effort from the patient. Results were organized into 2 overarching themes of social relationships and aesthetics with subthemes for each. Understanding methods MM patients who are receiving ASCT use to negotiate normalcy during treatment may be helpful for developing interventions for alleviating distress during this difficult time.
... As such, online-based communication such as blogs can also have an overall positive effect on increasing general communication and coping behaviors, termed "cybercoping" (Kim & Lee, 2014). Indeed, increased self-efficacy or the belief one can achieve a particular goal, coupled with the coping strategies necessary to achieve those goals have been identified as important for staving off negative emotions in persons with AD and other types of cognitive impairment (Halpin, Dillard, & Puentes, 2016;. Furthermore, some evidence exists that individuals with AD perceive the information provided by peers (i.e., other people with AD) in these online groups to be high quality (High & Solomon, 2011). ...
Background: People with Alzheimer's disease (AD) and related dementias (ADRD) often use complementary and alternative medicine (CAM) without oversight from attending cli-nicians-leading to possible negative health consequences, such as polypharmacy. While there is evidence these individuals seek online health advice from others with ADRD, little is known about how online discussion boards support health-seeking behavior among this population. Objective: The aim of the current study was to investigate how an online discussion board is utilized by people with ADRD ("Contributors"), to discuss CAM health treatments. Methods: This descriptive study adopted a thematic analysis approach that was applied to data sourced from online discussion boards for people with ADRD. Results: Contributors often referred to "best practices" and emphasized exercise and a special diet to complement the treatments they were prescribed by their treating clinician. CAM was also discussed addressing both physical and emotional concerns along with side effects of prescribed medications. Contributors referred to a variety of sources regarding evidence for treatments including referring to authorities (i.e., published research, websites or news, clinicians' recommendations) and asking their cohort for a second opinion based on the cohort's own experiences. Conclusions: Understanding how people with ADRD talk about CAM is important for guiding treatment decision making, particularly when health decisions are made without clinical oversight. This study highlights the variety of methods people with ADRD discuss CAM in an online support group.
... Emotional processing also plays a critical role in the way patients learn and interact with new information. SEA-Theory posits that social and psychological factors interact to produce an emotional response [7]. Specifically, the patient's relationships with their formal care provider(s) (e.g., physicians), and informal caregiver(s) (e.g., spouse), as well as psychological resources including their self-efficacy and ability to adapt, all interact to increase or decrease the likelihood of experiencing emotional distress. ...
... Using a utilizationoriented framework, we positioned the R4T formative evaluation to focus on the patient and caregivers experience. Drawing on SEA-Theory [7], evaluators sought to focus the intervention on psychological and social factors which may impact a patient's finite ability to process new information. For example, in the absence of information on what to expect before, during, and after transplant, patients and caregivers often turned to web-based resources which may or may not have been accurate and/ or pertained to their upcoming journey. ...
Multiple myeloma (MM) is an incurable cancer characterized by abnormal plasma cells in the bone marrow, resulting in increased risk of infection. Autologous stem cell transplant (ASCT) is the most effective treatment for MM, but successful transplant requires the patient and caregiver to learn and independently implement medical tasks. The Ready for Transplant (R4T) ethnographic-based formative evaluation includes evaluation of ongoing patient education and the addition of novel supplemental educational videos that patients can review before in-person transplant education. To evaluate R4T, a formative evaluation informed by utilization-orientated evaluation theories, including over 150 hours of ethnographic observation of nurse/patient education (N = 70), plus retrospective and prospective patient (N = 35) and clinician interviews (N = 7) was conducted over 18 months. Through thematic analysis, barriers and facilitators of the patient's ability to process education surrounding ASCT were identified. Barriers included anxiety surrounding what to expect in ASCT, anxiety surrounding what to expect at the education visit, overwhelming volume of information, lack of medical expertise, and disengaged patients, while facilitators included large social networks willing to help and clinician adjusting script to meet unique needs of the patient. This manuscript represents an iterative method for improving on education that people with MM receive surrounding ASCT. Ultimately, the supplemental video-based education was created to address modifiable social and psychological factors by providing generalized information that could then be tailored during in-person meetings to meet each patients' individual needs.
... Health behaviors can also be predicted by perceived quality of social support of both informal social support (Cianelli, Villegas, McCabe, de Tantillo, & Peragallo, 2017;VanderDrift, Ioerger, Mitzel, & Vanable, 2017) and formal care providers (Flickinger et al., 2016). Yet, HIV-related stigma, including difficulties with disclosure, remain a barrier to establishing and maintaining these social ties (Earnshaw, Lang, Lippitt, Jin, & Chaudoir, 2015;Grodensky et al., 2015;Halpin, Dillard, & Puentes, 2016;Halpin, Rimland, et al., 2016;Turan et al., 2016). ...
... Here we apply the Socio-Emotional Adaptation (SEA) theory to evaluate combinations of psychosocial resources with the likelihood of experiencing particular emotions (Halpin, Dillard, et al., 2016). SEA theory is based on a multifactorial model that was developed among those with Mild CI and Alzheimer's disease, both cognitive disorders associated with ageing, and Alzheimer's disease typically diagnosed after 65 years. ...
... Psychosocial resources and emotions were identified from existing WIHS data to match closely with those identified in SEA theory (Halpin, Dillard, et al., 2016). The SEA theory includes five models that increase the likelihood of experiencing particular emotions based on combinations of psychosocial resources. ...
Decreased cognitive function is related to undesirable psychological outcomes such as greater emotional distress and lower quality of life, particularly among women living with HIV who experience cognitive impairment (WLWH-CI). Yet, few studies have examined the psychosocial resources that may attenuate these negative emotional outcomes. The current study sought to identify the interrelated contributions of social relationships and psychological resources in 399 WLWH-CI by applying Socio-Emotional Adaptation (SEA) theory using data from the Women's Interagency HIV Study (WIHS). Cognitive impairment (CI) was defined as impairment on two or more cognitive domains. Logistic regression models were used to estimate the odds of experiencing specific emotions due to a combination of four psychosocial resources. Emotions (i.e., depression, apathy, fear, anger, and acceptance) were related to a combination of binary (positive/negative) psychosocial resources including relationship with an informal support partner, relationship with a formal caregiver, coping, and perceived control. Understanding the conditions that may influence emotions in WLWH-CI is important for identifying and appropriately addressing the needs of this population. As CI increases, these individuals experience increasing challenges with articulating their care needs and having their needs met. As such, it becomes increasingly important to identify possible triggers for emotional responses to best address these underlying challenges.
... Especially, given barriers identified based on staffing limitations, future studies should include perspectives of AL staff. High levels of cognitive impairment observed at Fairhaven also could be viewed as a limitation in terms of quality of data; however, research shows that persons with cognitive impairment can provide reliable and insightful information regarding their daily activities and care needs (Halpin et al., 2016;Vandenberg et al., 2018). Researchers were trained and had experience interviewing persons with cognitive impairment, which in conjunction with ethnographic observations contribute to the study's rigor. ...
Despite the well-known health benefits of physical activity, older adults are more sedentary than any other age group. This issue is particularly true for assisted living (AL) residents, which also represents an important and often overlooked aspect of palliative care. Here, we analyze ethnographic and interview data from a longitudinal study aimed at identifying best practices for palliative care in one African American AL community. The aim was to identify the factors that facilitate and constrain resident participation in instructor-led group exercise. Thematic analysis identified several main themes including the quality and location of the exercise program, AL staffing limitations, residents' health and function, values about exercise, and residents' interest in recreation and social engagement. We identified facilitators and barriers that shaped residents' opportunity, desire, and commitment related to attending group exercise. Findings have implications for interventions aimed at increasing resident participation in group exercise, leading to multiple health benefits.
... 15 Based on the film's perspective, the purpose of the current study was to examine representations in Still Alice of the lived experience of AD through Interpretative Phenomenological Analysis (IPA) guided by Socio-emotional Adaptation Theory. 16 Socio-emotional Adaptation Theory posits that a combination of psychosocial resources (eg, formal caregiver support, informal caregiver support, selfefficacy, and adaptation) may predispose persons with AD toward various emotional responses. Team members included a gerontologist with expertise in qualitative methods and a doctorally-prepared physical therapist. ...
... The authors created a provisional codebook-with codes and definitions both from deductive codes based on the Socio-emotional Adaptation Theory and inductive codes from careful reading of the transcript-for use during the next phase of analysis. 16 (Appendix). The codebook included each of the psychosocial components of the theory (eg, formal caregiver) along with emotions (eg, depression). ...
... 26 As such, Socio-emotional Adaptation Theory was used as a guiding framework for understanding how psychosocial resources, including social connectedness, were represented in Still Alice. 16 Films that present a broad range of emotional reactions among persons with AD of varying abilities are important for shaping social discourse. ...
B A C K G R O U N D : Despite the fact that Alzheimer's disease (AD) afflicts millions of people in the United States, most Americans do not come into contact with anyone who has the disease. Due to this lack of firsthand experience with AD, the general public's understanding about the experiences of individuals living with the disease, and their framework of expectations about it, are often built on social representations-such as films. O B J E C T I V E : We examined representations of the lived experience of an individual with AD in the film Still Alice using qualitative methodology.
... It is imperative that future research examines PWD's reactions to their diagnoses in light of previous findings that couples often lack appropriate support following a diagnosis of dementia. Insufficient support can lead to difficulty in dealing with the diagnosis (Pesonen et al., 2013;Robinson et al., 2005;Stokes et al., 2012), and the emotional reactions to the dementia diagnosis are insufficiently explored in the dementia literature (Halpin, Dillard & Puentes, 2017). ...
It is estimated that by the year 2050, one in three Americans 65 years and older will be living with some form of dementia, a group of symptoms that includes over 50 known types of diseases and conditions that currently affect over 6.7 million people in the United States. Because the psychological and physical decline associated with dementia impairs memory, judgment, communication, and other abilities that make independent daily functioning possible, it is important to care for the afflicted individuals in a way that takes care of their basic needs and preserves their sense of self, or their personhood. Many individuals in the early stage of dementia (ESD) live at home and are cared for by their spouses. How caregiving spouses perceive their partner with dementia and what meaning they give to the psychological and cognitive decline may be extremely important to knowing how they provide care for their partners. This knowledge also can improve targeted support for couples living with dementia. This study explored how eight caregiving wives perceived the personhood of their husbands in ESD. The three research questions were: (1) What meaning do caregiving wives give to the cognitive, behavioral, social, and physical changes in their husbands in the early stage of dementia? (2) What are caregiving wives’ perceptions of personhood of their husband in the early stage of dementia? And, (3) What influences caregiving wives’ perception of the personhood of their partner in the early stage of dementia? The participants were recruited through the Alzheimer’s Association of Connecticut. A 3-phase interview process was employed in this qualitative, interpretative phenomenological analysis study, so that caregivers could narrate their experiences in their own words. This interview process afforded the exploration of the participant’s experiences in the broader context of her life (1st and 2nd interviews) and invited the participant to reflect more deeply on the meaning of these experiences (3rd interview). Most wives felt that their husbands did not change in terms of personhood, despite the effects that dementia had on them by the early stages of the disease. The wives noticed the changes in their husbands’ behavior prior to the husbands being diagnosed with dementia but did not seek support until these issues started affecting the husbands’ daily functioning. Following the diagnosis, the wives worked to make adjustments to their daily lives and utilized social and medical support to provide the necessary care for their husbands. The findings suggest that the wives relied on their prior knowledge and exposure to dementia, as well as religion, friends, family, and supportive professionals to help them navigate and make meaning of their experiences of having a husband experiencing the early stages of dementia.
... Various disciplines recognize how they may support the caregiver of the PwD. Halpin et al. (19) formulated a theory about the socio-emotional adaptation of the PwD. They found that when the caregiver, along with professionals assisting in treatment of the PwD are accurately understanding behaviors and discovering the underlying unmet needs, the PwD can experience an improved mood by adapting to the specific situation. ...
People with Alzheimer's and related dementias and their family caregivers who reside at home have unique strengths and needs. They have the strengths of being in a place with which they are familiar, with people whom they are in close relationship. Often it is the spouse who provides the primary care of their loved one, and as the disease progresses both members of the couple are at risk for depression, isolation, and decreased contact with peers and community networks that serve to help maintain sociocultural, intellectual, physical, sensory, and spiritual needs. The person with Alzheimer's Disease (AD) loses life skills and sense of self as their memory loss worsens, and the caregiver-loved one, whether they are the spouse, relative, or close companion, becomes increasingly burdened physically and emotionally. Meaningful support through a community-based peer group helps meet the needs of the person with dementia and their caregiver from the first symptoms to the later stages of AD, through a carefully designed music therapy program tailored to preferences, culture, and ability. The music therapist working in the community provides practical leadership in coordination with local agencies, understands the needs of the person with dementia and their caregiver from a cultural and psychosocial perspective, and is creatively equipped in all facets of musical engagement for health and wellness, and fosters cognitive/intellectual, socio-emotional, physical, and spiritual support. The MT support group was found to relieve some of the strain on caregivers by allowing for greater emotional support through relationships with peers and professionals, and through the increase of meaningful interactions with their loved one with dementia. Through enjoyment of shared, pleasurable music experiences that stimulate memories, movement, language, and socialization, the person with AD and their caregiver developed a deeper connection with each other, and gained support, creative expression, and comfort from their peer group, as well as practical networking and sharing of resources and information related to their specific health and wellness needs. The community-based MT support group has been replicated twice within the region, and is a promising model for other communities. Formal research is recommended to provide further evidence of the effectiveness of the approach, and to allow for greater accessibility for marginalized people to participate in a program such as this in their own community.
... Additionally, the ability to find meaning in day to day life, termed meaning making, has been highlighted as a critical component for maintaining continuity following declining health (Frankl, 1985;Menne, Kinney, & Morhardt, 2002). There exists multiple potential resources for increasing meaning following declining health including a review of positive experiences through one's life, termed reminiscing (Beike & Niedenthal, 1998;Singer, 2004), embracing a new identity (Malhotra & Rowe, 2014), and socially supportive environments (Clare, Nelis, Martyr, Roberts, Whitaker, Markova et al., 2012;Woods, Nelis, Martyr, Roberts, Whitaker, Markova et al., 2014;Clare, Quinn, Jones, & Woods, 2016;Halpin, Dillard, & Puentes, 2016). Although psychological and social resources, including those that help people adapt to their changing health and find meaning affect about 80% of health outcomes, healthcare spending is largely directed toward clinical care, not improving the social environment (Teutsch & Fielding, 2011). ...
... This study represents a secondary data analysis on a sub-set of participants from the Alzheimer's and Emotions study (Halpin et al., 2016), which investigated the emotional reactions to the progression of MCI/AD. Additional details of the analysis and recruitment were previously described by Halpin and colleagues (Halpin et al., 2016). ...
... This study represents a secondary data analysis on a sub-set of participants from the Alzheimer's and Emotions study (Halpin et al., 2016), which investigated the emotional reactions to the progression of MCI/AD. Additional details of the analysis and recruitment were previously described by Halpin and colleagues (Halpin et al., 2016). In the original study, fourteen patient/informal care partner dyads participated in one hour, semistructured interviews. ...
Emotional disturbances are common in people living with mild cognitive impairment or Alzheimer’s disease (MCI/AD). Those who remain self-aware frequently experience a unique set of emotional disturbances, such as depression, as a reaction to expectations regarding cognitive decline and non-ideal social environments. Yet a subset of these individuals are resilient, progressing through their condition without emotional pathology. The current study represents a secondary analysis of patient/care partner dyads (N=6) from the Alzheimer’s and Emotions study who were found to exhibit resilience. Patients had a range of educational achievement from high school graduate to graduate degree, all lived with their care partner spouses, and experienced mild levels of cognitive impairment (median MMSE= 24; Functional Assessment Staging of Alzheimer’s Disease-FAST score= 3.5). Interpretive Phenomenological Analysis was used to delve deeper into the characteristics surrounding these participants. Persons with MCI/AD utilized various strategies to adapt to and find meaning in their life despite their declining cognitive and physical functioning. Adaptation was defined by decisions that participants and their care providers made which aided in their adapting to their changing condition (e.g., appraising one’s current abilities, reappraising abilities and putting things into perspective, and adjustment to current level of functioning). Participants found meaning by reminiscing about the things that made their life meaningful in the past, embracing their current identity as someone with MCI/AD, and maintaining familial and non-familial social support relationships. These non-pharmacological strategies might be helpful in developing resilience among a population of persons with MCI/AD despite their changing needs.
