Three phase development of caring capacity in primary caregivers for relatives with Alzheimer's disease

Multiple, open-ended, qualitative interviews were conducted with 16 primary caregivers for relatives with Alzheimer's disease in order to describe caregiver self-development through the caregiving journey. Caregiver change is traced up to five years after the care recipient's death. Caregivers' capacity for caring was found to be at the core and to unfold in three phases: development of caring capacity for the care recipient, development of capacity for self-care, and development of caring capacity for others. The four elements of caring capacity (perception, motivation, competency, action) are expressed in relation to the care recipient, to the self, and to less familiar “others”. The caregiving experience tends also to prompt caregivers to become caregivers for humanity and to expand their sense of self. This may lead to the development of the altruistic self, which incorporates both a selfless concern for the welfare of others and a self-directed concern for one's own welfare.     

Immunotherapy for Alzheimer's disease

Strong evidence exists indicating that chronic neuroinflammation contributes to the progression of Alzheimer's disease (AD). A major focus of AD-associated research has been amyloid-beta (Abeta) protein deposits. Vaccination with Abeta stimulates phagocytosis of Abeta in transgenic mouse models of AD, leading to clearance of the deposits. Similar vaccination in humans with AD has, however, led to meningoencephalitis in some cases. The difference probably depends on the initial level of brain inflammation, which is much higher in bona fide AD in humans than in the transgenic mice. Because both pro- and anti-inflammatory activation of immune cells are possible, stimulating the phagocytic action of microglia while simultaneously stimulating anti-inflammatory activity might be beneficial in AD.     

Reciprocal relations: The recognition and co-construction of caring with Alzheimer's disease

The literature on caring for people with Alzheimer's disease predominantly underscores the role of the care giver, largely ignoring the care receiver. Care is viewed as a service to mind someone rather than a compassionate act of shared relationship. Alzheimer's disease is portrayed as negatively influencing reciprocity in caring relationships, precipitating their gradual dissolution. We report findings from an ethnographic study that followed nearly 100 dyads of people with Alzheimer's disease and those who cared for them for more than 1 year. ‘Give and take’ in a relationship appears richer and more ambiguous than previously supposed; despite one party's cognitive losses, shared meanings can still be experienced by both people. In an in-depth examination of the narratives of co-carers, gathered during home visits, relationships were seen to be dynamic co-constructions built upon everyday events, interactions, environments and disease progression. Importantly, we show that people with Alzheimer's disease express insight and awareness despite decline.     

Informal Caregiving: Dilemmas of Sandwiched Caregivers

Increased demand will intensify pressures for informal caregiving, especially for sandwiched caregivers. Using 1999, National Long Term Care Survey data, we contrasted socio-demographic statistics, care environments, activities of daily living (ADL) and instrumental activities of daily living (IADL) assistance, life quality, and employment burden of sandwiched versus non-sandwiched parental caregivers. Regression analysis explored variables influencing caregiving hours, employment accommodation, stress, strain, time for self, social life limits, free time, and excess burden. We found no differences in caregiving hours, no greater labor force accommodation, but lower quality of life among sandwiched caregivers with more than they can handle, but they undertook parent care despite quality of life reduction. Uniquely, the research indicates sandwiched caregivers’ employment mitigates stress, strain, and burden and supports policy changes providing more supportive workplace environments.

Caregiving mothers of children with impairments: coping and support in Russia

Parents providing long‐term care for their children with impairments face myriad physical and emotional challenges. Researchers have examined coping strategies among parent caregivers in various contexts internationally. However, little research has focused on caregiving mothers of children with impairments in developing countries, and even less on mothers in Russia. The purpose of this qualitative study is to investigate the ways in which caregiving mothers cope and their perceptions of services and supports they need and utilize in a small Russian city. Semi‐structured interviews were conducted with caregiving mothers (n = 20) concerning postnatal and current treatment, information and services, finances, social support, and future plans. Analysis revealed that planning for the future and navigating limited resources, overcoming structural barriers and cultural obstacles, and maintaining social support were the three most important facets of mothers’ abilities to cope with the demands of caregiving.     

Older adults with Alzheimer's disease in a faith community

In the first phase of this study, focus groups were conducted with 12 clergy to explore how to meet the needs of Alzheimer's disease patients and their families. The clergy reported that although they do reach out to these families, they have not received formal training, so they often do not know what families need. Members of their congregations who are trained in working with Alzheimer's patients need to partner with the clergy in reaching out to these families. Although this article mainly focuses on the clergy's perspective, in the second phase of the study, caregivers and early-stage Alzheimer's patients were asked to describe their experiences of spiritual connections related to Alzheimer's disease.     

Struggling to do the right thing: stories from people living with Alzheimer's disease

The information presented in this article is meant not to provide answers, but rather to provoke thought about questions related to ethical decision making in people with Alzheimer's disease. Post (1995) suggested that: among the several most urgent questions of our time is whether human beings have in place the moral and ethical signposts that can point toward a future in which those who are so forgetful will be treated with dignity. (p. 1) Because American society places a high value on rationality and productivity, the life of people with Alzheimer's disease may be equated with hopelessness and uselessness. Thus, health care professionals have a moral obligation to rethink the assumptions that underlie their definitions of quality of life. We cannot know what should be done unless we learn to listen to the life stories of our patients and their families. Perhaps Sherry's comment best reflects how, even with devastating changes in a loved one's sense of identity, one can find ways to respect a new level of relationship: I still feel that he's [Sherry's husband] a human being, and I've tried to ensure that he has a quality of life. When I go visit him, sometimes he slips in and out of being normal. I would always hope that he's still treated with the dignity that he should have as a human being.... I guess what I'm saying is that, even though it seems weird,...there's still a human being in there sometimes, I guess there really is, and it's important to remember that. I can enjoy my husband a lot more now [that he's being cared for in a facility] than I could when I had him 24 hours a day. That was a nerve-wracking experience, especially when there were behavior problems.... He's still the love of my life.     

A model for assertive training: Integration of feelings and behavior

The current emphasis in assertive training is based on behavioral and cognitive approaches. In this paper the authors present an approach which explores the interconnectedness of feelings and behavior in the learning of assertive skills. Creatively designed structured exercises are presented as tools used to bring people into contract with themselves, to highlight nonfunctional behavior, and to provide the means to try out and practice new assertive behaviors. The impact of the exercises as a learning vehicle in assertive training is described and discussed.     

Informal Caregiving for Elders in Sweden: An Analysis of Current Policy Developments

The purpose of this study was to conduct a systematic review of the literature related to state policies concerning older drivers and to draw policy conclusions about which policies appear to work to reduce older driver crashes and to identify areas needed for further research. Specific policies examined in this paper concern medical reporting and medical review, license renewal processes, and driver testing. A study was included in the systematic review if it met the following criteria: published in English between 1991and January 2013; included data on human subjects aged 65 and older residing in the United States; included information on at least one policy related to older drivers; and had a transportation-related outcome variable (e.g., crash, fatality, renewal). A total of 29 studies met inclusion criteria. Twenty-two studies investigated license renewal and seven articles examined medical reporting. In-person license renewal requirements were associated with reduced risk for fatal crashes. Restricted licenses were associated with reduced number of miles driven per week. More intensive renewal requirements and being the subject of a medical report to the licensing authority was associated with delicensure. Given the importance of driving to mobility, quality of life, and public safety, more research is needed.     

Narrative and identity in Alzheimer's disease: A case study

In this case study, focus is on how persons with AD use their remaining linguistic and cognitive resources, together with non-verbal aspects of the storytelling event, as resources in communicating and negotiating their identities in everyday encounters. The results of the analysis, focusing on the telling of the stories, indicate that other aspects than the temporal and referential organization of the narratives has become important resources for the teller in establishing and negotiating identity. The telling of temporally discontinuous narratives does not appear to affect or disrupt the teller's experience of some sort of a continuous sense of self and identity but are probably more a problem to persons without this kind of diagnosis. Being afflicted by AD most likely leads persons to try to invent and use alternative communicative recourses in order to sustain factors like their senses of self and identities. For researchers this makes it important to try to base their analysis on the actual organization of the talk and to focus on the functions of various responses and utterances in the interaction.     

Neuropathology in Alzheimer's disease: awaking from a hundred-year-old dream

For one hundred years after Alois Alzheimer's first report of Alzheimer's disease (AD) in 1906, the pathological hallmarks of the disease, senile plaques and neurofibrillary tangles (NFTs), have been attractive targets for researchers. Therefore, not surprisingly, efforts to understand disease mechanisms have concentrated on the cell biology of amyloid-beta (Abeta) deposition as senile plaques or on the phosphorylation and aggregation of tau as NFTs. However, it now appears that this focus on pathology as a central contributor to disease may be misguided. Indeed, neurons associated with Abeta and NFTs in AD brain show a decrease in oxidative damage relative to those in vulnerable but morphologically intact areas of the brain, suggesting that neurodegenerative lesions are compensatory phenomena, and thus manifestations of cellular adaptation. That Abeta and tau accumulations indicate an age-related physiological reaction to chronic stress calls into question the rationale of current therapeutic efforts targeted toward lesion removal. Moreover, if this concept holds true for pathology in other neurodegenerative diseases, we may need to restructure our thinking and undergo a paradigm shift before substantial progress can be made in therapeutic intervention.     

Adolescents' feelings about openness in adoption: implications for adoption agencies

Adoption research commonly uses parents' reports of satisfaction when examining openness in adoption arrangements. This qualitative study aimed to fill a gap in the adoption research by using adolescents' voices to gain a better understanding of their adoption experiences. Adopted adolescents (n = 152) were interviewed concerning their satisfaction with the openness in their adoption arrangements with their birthmothers. Results and implications from this study may affect how adoption agencies work with adopted adolescents and their families, and may influence a broader understanding of the recent trend toward open adoption arrangements.     

In their voices: Identity preservation and experiences of Alzheimer's disease

Although much research pertaining to Alzheimer's disease (AD) explores the impact on caregivers, there is a general paucity of data on experiences of living with the condition. Contemporary medical initiatives to diagnose people earlier in the illness trajectory make it increasingly possible to hear the voice of people with memory loss, which can improve both public perception and policy. This study examined the impact of being diagnosed with early AD on identity construction. Respondents highlighted aspects of being diagnosed that were instrumental in making sense of changes in their lives and identities, including defining moments, to tell or not to tell, and preservation. Findings suggest that understanding how to identify memory deficits, the context of diagnosis, and the techniques employed for managing illness are crucial to subjective experiences. Despite normative expectations and the rhetoric of loss, respondents deliberately manage their interactions to make sense of their lives and preserve themselves.     

Functional foods for cardiovascular disease in women

Cardiovascular disease (CVD) is the leading cause of death in women. Functional food consumption can play an important role in the prevention and treatment of CVD. The purpose of this review is to establish recommendations for the intake of functional food ingredients in a healthy diet, such as soy proteins and isoflavone, omega-3 fatty acids (FAs) from fish oils (FOs) including eicosapentaenoic acid (EPA) and docoshexaenoic acid (DHA) and plant sterols-(PS) enriched foods - for prevention and treatment of CVD in postmenopausal women. First, controversial results exist on CVD risk factors after intake of soy protein and isoflavone that indicates that further clinical studies need to be done to better understand their role in maintaining and improving cholesterol levels. However, since soy contains polyunsaturated fats, replacing some higher fat meat protein sources with soy products may contribute to cardiovascular health. Secondly, FOs, including EPA and DHA, have shown promising effects for lowering triglyceride levels. In addition, emerging research appears to show that omega-3 FAs may have additional health effects with improved arterial health and a reduction in oxidative stress in postmenopausal women. Thirdly, foods and beverages supplemented with PS may reduce cholesterol; therefore, are a worthy addition to interventions aimed at lowering heart disease risk in women. Overall, incorporating functional foods into a healthy diet may be beneficial in helping to reduce lipids levels and thus the risk of CVD.     

Living with suicidal feelings: Japanese non-profit organizations for suicide prevention amid the COVID-19 pandemic

The number of suicides in Japan increased for the first time in 11 years during the COVID-19 pandemic. This trend is particularly high among employed women and students. The Japanese government expanded its budget for providing telephone and social network service (SNS) counseling by prefectures and non-profit organizations (NPOs). On the basis of interviews with the chairman as well as counselors of an NPO in Osaka (Japan) that has provided telephone counseling services on suicide for over 40 years, this study examines suicide and suicide prevention amid the COVID-19 pandemic with a particular focus on how suicidal feelings are accepted. The results clarify that people do not wish to die just because of financial troubles or health problems; rather, they have lost the meaning in their life in the conflicts between social conditions and their personal life histories. Additionally, as volunteer counselors often experience the suicide of close relatives, their empathy for a caller may be based on their experiences of being overwhelmed by the realization of the otherness of others. They do not regard the acceptance of suicidal feelings as a “job,” but act as “friends.” Although modern society conceals death and suicide cases, the key to achieving a society where no one is driven into committing suicide is to place human life and human rights first as well as to talk about suicide and suicidal feelings without making the subject taboo or an aberration.     

Connections and Constraints: The Effects of Children on Caregiving

This article assesses the effects of children on parents' involvement in caregiving. On the basis of interviews with 273 respondents, we address the effects of having children on care given to kin and nonkin; assess the effects of children's characteristics, especially age and gender, on the help mothers and fathers provide; and examine how these vary with mothers' employment. Overall, we find that the presence of children connects parents into networks of care more than it constrains them. The effects vary depending on the characteristics of the child (including age and gender) as well as characteristics of the parent (like gender and employment).     

Looking back from loss: views of the self in Alzheimer's disease

This article examines the narrative construction of Alzheimer's disease in three autobiographies. Two of them use traditional linear structure, which demands a coherent, consistent “self” as narrator. The third is structured as a journal, allowing the reader to experience more fully the disjointed nature of the disease. All three create a clear sense of “self,” which contrasts strongly the idea that Alzheimer's disease entails a loss of “self”.     

Caregiving and cost of health care for later life families

In the future, the number of families providing care for elderly relatives as well as the costs associated with health care will continue to increase. The caregiving triad—individual, family and government—will need to balance the resources to meet the needs of the elderly. Public policy changes can assist older persons and their families as they address caregiving in the later years.     

Targeting the role of the endosome in the pathophysiology of Alzheimer's disease: a strategy for treatment

Membrane-bound endosomal vesicles play an integral role in multiple cellular events, including protein processing and turnover, and often critically regulate the cell-surface availability of receptors and other plasma membrane proteins in many different cell types. Neurons are no exception, being dependent on endosomal function for housekeeping and synaptic events. Growing evidence suggests a link between neuronal endosomal function and Alzheimer's disease (AD) pathophysiology. Endosomal abnormalities invariably occur within neurons in AD brains, and endocytic compartments are one likely site for the production of the pathogenic beta-amyloid peptide (Abeta), which accumulates within the brain during the disease and is generated by proteolytic processing of the amyloid precursor protein (APP). The enzymes and events involved in APP processing are appealing targets for therapeutic agents aimed at slowing or reversing the pathogenesis of AD. The neuronal endosome may well prove to be the intracellular site of action for inhibitors of beta-amyloidogenic APP processing. We present here the view that knowledge of the endosomal system in the disease can guide drug discovery of AD therapeutic agents.