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The four stages of dementia. Reprinted from reference 11. Used by permission.
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This article presents an overview of end-of-life care for individuals with Alzheimer's disease (AD) and their family caregivers. We define end-stage AD, and review neuropsychological and behavioral characteristics along with concomitant issues in therapeutic assessment. We then review the literature regarding programs and treatments for end-stage A...
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In Korea, the Hospice, Palliative Care, and Life-sustaining Treatment Decision-making Act was enacted in February 2016 in order to ensure that the patient's self-determination in end-of-life care processes is respected. To enhance physicians' understanding of this act and to provide proper criteria for medical judgment in variety of clinical settin...
Background:
Substitute decision-makers are integral to the care of dying patients and make many healthcare decisions for patients. Unfortunately, conflict between physicians and surrogate decision-makers is not uncommon in end-of-life care and this could contribute to a "bad death" experience for the patient and family. We aim to describe Canadian...
Background:
Haemodialysis patients receive very little involvement in their end-of-life care decisions. Issues relating to death and dying are commonly avoided until late in their illness. This study aimed to explore the experiences and perceptions of doctors and nurses in nephrology for involving haemodialysis patients in end-of-life care decisio...
Background
Although advance directives (AD) have been implemented for years in western countries, the concept of AD is not promoted extensively in eastern countries. In this study we evaluate a program to systematically conduct advance care planning (ACP) communication for hospitalized patients in Taiwan and identify the factors associated with AD...
Advance care planning (ACP) increases the likelihood that individuals who are dying receive the care that they prefer. It also reduces depression and anxiety in family members and increases family satisfaction with the process of care. Honoring Choices Minnesota is an ACP program based on the Respecting Choices model of La Crosse, Wisconsin. The ob...
Citations
... Although progressive cognitive decline is the major symptom of AD, 10-40% of AD patients exhibit signs of motor dysfunction, including gait, locomotion and balance deficits early in disease progression (O'Keeffe et al., 1996;Goldman et al., 1999;Scarmeas et al., 2004;Buchman and Bennett, 2011;Albers et al., 2015) while the majority of patients experience severe motor impairment during later stages of disease (Allen et al., 2003;Kumar et al., 2021). Furthermore, changes in motor function may proceed other symptoms of AD as well as correlate with increased severity and mortality (Albers et al., 2015). ...
Introduction: Alzheimer’s Disease (AD) patients exhibit signs of motor dysfunction, including gait, locomotion, and balance deficits. Changes in motor function often precede other symptoms of AD as well as correlate with increased severity and mortality. Despite the frequent occurrence of motor dysfunction in AD patients, little is known about the mechanisms by which this behavior is altered. Methods and Results: In the present study, we investigated the relationship between cerebrovascular impairment and motor dysfunction in a mouse model of AD (Tg6799). We found an age-dependent increase of extravasated fibrinogen deposits in the cortex and striatum of AD mice. Interestingly, there was significantly decreased cerebrovascular density in the striatum of the 15-month-old as compared to 7-month-old AD mice. We also found significant demyelination and axonal damage in the striatum of aged AD mice. We analyzed striatum-related motor function and anxiety levels of AD mice at both ages and found that aged AD mice exhibited significant impairment of motor function but not in the younger AD mice. Discussion: Our finding suggests an enticing correlation between extravasated fibrinogen, cerebrovascular damage of the striatum, and motor dysfunction in an AD mouse model, suggesting a possible mechanism underlying motor dysfunction in AD.
... People with advanced dementia are often not able to express their wishes regarding current and future care, due to both limited verbal and written expression and lack of capacity. 69 This adds to the complexity in meeting current care needs as well as the development of an advance care plan. 6 Difficulties with accurate prognostication in dementia, coupled with the rapidly increasing incidence and prevalence of dementia, may see existing community and hospital palliative care services overwhelmed. ...
While many of the maladies of the 20th century are steadily coming under control, the march of neurodegenerative disorders continues largely unchecked. Dementias are an exemplar of such disorders; their incidence and prevalence continue to rise, in large part due to a steadily ageing population worldwide. They represent a group of chronic, progressive and, ultimately, fatal neurodegenerative diseases. Dementia has remained therapeutically recalcitrant. It is not a single disease, and because of that, we cannot expect a single panacea. While primary prevention rightly gains prominence, those with established disease currently require a shift in focus from curative intent towards improved quality of life. Enter palliative care. The sheer number and complexity of needs of patients with dementia, from the physical to the psychosocial and spiritual, necessitates the engagement of a wide range of medical disciplines, nursing and allied health professionals. One of those disciplines, as highlighted in the recent Australian Royal Commission into Aged Care Quality and Safety, is palliative care. This paper shall expand upon that role in the overall context of care for those with dementia.
... The progressive onset of OD in dementia is often a late-stage defining diagnosis that demands a significant increase in caregiving needs (Allen et al., 2003). Indeed, more patients with severe dementia (44%) aspirate, compared to those with moderate dementia (12.5%), and lower cognitive scores are associated with greater feeding assistance (Alagiakrishnan et al., 2013). ...
Purpose:
Oropharyngeal dysphagia (OD) affects nearly 90% of hospitalized persons with dementia. Yet, little is known about the care partner experience. The purpose of our study was to describe the experience of care partners related to OD management in patients with dementia as they transition from the hospital to the community setting.
Method:
Using a mixed-methods approach, we conducted telephone interviews with care partners of recently hospitalized older adults with dementia and OD. Interviews consisted of quantitative/qualitative assessments: communication with health care team, perception about risks/benefits of dysphagia diet, and informational needs. Descriptive statistics were used for quantitative data. For the qualitative data, transcripts were independently coded by research team and categorized into themes.
Results:
Of the care partners interviewed (N = 24), mean age was 63.5 (SD = 14.9), 62.5% were female, and 66.7% were White. Nearly 60% of patients had severe dementia, and 66.7% required feeding assistance. Care partners (n = 18) reported moderate burden of 14.11 (SD = 10.03). Most care partners (83.3%) first learned about OD during hospitalization. Only 29.2% of care partners reported that they discussed OD with a physician. Care partner perception of dysphagia diet risks/benefits ranged widely: 33.3% thought dysphagia diets would promote a more enjoyable existence. Over half (54.2%) of care partners indicated no choice regarding dysphagia diets was presented to them. Two thirds (n = 16) of care partners were nonadherent to diet recommendations; the top reason (n = 13%) was diet refusal by patients. Although 83.3% of care partners wanted additional information regarding dysphagia management, only 20.8% sought any.
Conclusions:
Our findings highlight that care partners of persons with dementia face significant OD-related communication and informational gaps, which may lead to elevated burden. Future studies are needed to address unmet OD-related care partner needs.
... Caregiving for end-stage patients can be challenging and is often associated with poorer social and occupational engagement, and depression. (Allen et al., 2003) All of these may give rise to increased caregiver burden (Allen et al., 2003;Desai et al., 2004) which, in turn, hinders the caregiving role and may precipitate elderly maltreatment, or result in increased long-term care placement (Sadock et al., 2017). End-of-life care (ELC) denotes support to a person suffering from the late stage of any illness, including dementia, to help the person live "as well as possible" till death (Alzheimer's Society, 2021). ...
... Caregiving for end-stage patients can be challenging and is often associated with poorer social and occupational engagement, and depression. (Allen et al., 2003) All of these may give rise to increased caregiver burden (Allen et al., 2003;Desai et al., 2004) which, in turn, hinders the caregiving role and may precipitate elderly maltreatment, or result in increased long-term care placement (Sadock et al., 2017). End-of-life care (ELC) denotes support to a person suffering from the late stage of any illness, including dementia, to help the person live "as well as possible" till death (Alzheimer's Society, 2021). ...
... End-of-life care (ELC) denotes support to a person suffering from the late stage of any illness, including dementia, to help the person live "as well as possible" till death (Alzheimer's Society, 2021). ELC decisions become important in cases of dementia to cater to the well-being, dignity, and needs of both patients and caregivers (Allen et al., 2003). ...
Background: Dementias are a group of gradually progressing neurodegenerative conditions, leading to significant impairment in cognition, functioning, decision-making, capacity and autonomy. With the rise of human rights and patient-centred perspectives in psychogeriatric management, physician-assisted suicide (PAS) has emerged as an important and integral part of end-of-life care in advanced dementias.
Methods: With only few original studies in the area, this paper takes a narrative and critical approach to review the global legislations, treatment decisions, debates as well as perspectives from patients, families and medical professionals.
Results: PAS and euthanasia are legally allowed in countries like Belgium, Netherlands, Switzerland and few states of the United States (U.S.). Germany has fewer clearer legislations in this regard. The Oregon state requirement and care criteria of the Dutch euthanasia act form the basis of most such laws. Even in the presence of these provisions, PAS is fraught with multiple medical, ethical, moral and legal dilemmas and physicians as well as caregivers are quite heterogenous in their outlook. While right to live with dignity and need to end incurable suffering form the main arguments for PAS, several arguments against it are possibility of undue influence, impaired judgement leading to biased decision-making such as depression and suicidality, inappropriate assessment of capacity, and that all deaths are not necessarily painful. These dilemmas are critically discussed in light of autonomy, decision-making and advanced directives in people living with dementia as well as the rationality of ending life and ‘right to live vs right to die’. Based on the findings, certain balanced strategies are highlighted for the health professionals.
Conclusion: The ‘slippery slope’ of PAS needs to be carefully evaluated from a social justice and human rights perspective to improve dignified end-of-life care in dementia. Considerations are also discussed from India, a rapidly-ageing nation with no current provisions for PAS.
... 2012). PAC has been discussed extensively in clinical gerontological and psychological studies (Allen et al. 2003;Cohen et al., 2002), and was developed to measure the positive experience of caregivers while accomplishing service to their recipients (Tarlow et al., 2004). To our knowledge, up to now no studies have linked PAC and job satisfaction, which is an important gap in the existing literature that the current research seeks to resolve. ...
Depression is a prevalent disorder among domestic workers, including caregivers. Perceived discrimination and positive aspects of caregiving (PAC) may be predictors of caregivers’ depression. Using caregiver sample from domestic workers data (N = 611), we explored the association between perceived discrimination, PAC and depression of caregivers via introducing the mediating effect of job satisfaction. Amos (version 22.0) was used to conduct structural equation modeling (SEM), and bootstrap estimation method was deployed to examine the mediating effect in the model. The results demonstrated that perceived discrimination has a significant positive impact on the rate of depression, while PAC was significantly negatively associated with caregivers’ depression. The findings of this study also confirmed the mediating effect of job satisfaction in the relationship between perceived discrimination, PAC, and depression. The results of the study may provide practical implications for individual caregivers, employers and policy makers to attach great importance on caregivers’ mental well-being.
... Summing-up, several factors rationalise the use of sensory stimulation, among them: (1) dementia patients can experience sensory loss [2][3][4][5][6][7]; (2) sensory loss increase the risk of dementia [23]; (3) sensory decline and cognitive decline interact with each other [20][21][22]; (4) impact of sensoriostasis in intrapsychic comfort [24]; (5) people with severe AD who do not communicate verbally may show awareness at a sensory level and appropriate environmental stimulation may support its expression [25]; (6) sensory loss is a late feature in most AD cases [26] and given the impact of sensory impairment in quality of life [27], the sensory stimulation could be studied also as a palliative treatment. ...
Introduction:
Dementia is characterized by the presence of cognitive decline and can lead to sensory-perceptual alterations, compromising the functionality in activities of daily living. The main objective of this work is to review the characteristics of sensory stimulation programs in dementia and its effectiveness.
Areas covered:
Studies were identified through a literature search, following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) and the Cochrane Collaboration Guidelines. Twenty studies were included in this review. The studies used multisensory stimulation at different stages of dementia. The results show a lack of consensus regarding frequency, duration and number of sessions, as well as the duration of the interventions and assessment instruments used to evaluate the results. Multisensory stimulation, particularly Snoezelen, was the most widely used approach. Vision, hearing, touch, and smell were the most frequently stimulated senses. Most studies comprised pre- and post-intervention assessment, but few studies performed follow-up assessment. The interventions that revealed positive results in dementia were: Snoezelen, multisensory environment other than Snoezelen, and Multi-sensory Behavior Therapy.
Expert opinion:
This review weakly supports sensory stimulation in dementia, providing useful information for rehabilitation and future investigations.
... The clinical manifestation of Alzheimer's disease may start as a mild cognitive impairment [13] progressing to inability to encode new memories, to serious impairment of learning, to dramatic loss of professional capacities and verbal fluency, to an over simplification and regression of the social behavior and emotional interactions, resulting in the isolation of the patients in the framework of a tragic functional incapacity, in a state of profound dementia, concluding in a vegetative state at the end of life [14,15]. ...
Alzheimer's disease is a progressive neurodegenerative disorder leading gradually in profound dementia, with all the tragic consequence on the everyday life and the social behavior of the patients. The pathogenetic background of the disease is quite enigmatic, implicating several innate mechanisms and additional exterior factors formatting a chain of pathogenetic processes, resulting in synaptic loss, selective neuronal loss and serious decline of the mental faculties eventually. Among the pathogenetic factors the oxidative stress and the mitochondrial dysfunction may play a substantial role in the initial stage of the disease. Mitochondrial alterations may be induced by amyloid toxicity, which by the oxidative stress initiates a chain of pathological procedures resulting in profound dementia. In early cases of Alzheimer's disease we attempted to describe in electron microscopy the mitochondrial alterations in the perikaryon of neurons and astrocytes as well as in the dendritic profiles, the dendritic spines and the presynaptic terminals. The most frequent morphological alterations of the mitochondria consisted of disruption of the cristae and the accumulation of osmiophilic material seen mostly in the synaptic components and the dendritic profiles even in areas where minimal Alzheimer's pathology was observed, such as in the cerebellum and the hypothalamus. A substantial number of neurons demonstrated, in addition to alterations of the mitochondria an obvious fragmentation of the cisternae of Golgi apparatus. Since mitochondrial pathology plays an important role in the pathogenetic mechanism of Alzheimer's disease, we would feel that any therapeutic strategy aiming at protecting the mitochondrial integrity would be beneficial in the treatment of early cases of Alzheimer's disease. 2
... In dementia, end-of-life prognoses are difficult. 6 A need for palliative care for individuals with dementia has been recognized. [7][8][9] German law does not require the consideration of the behavior of an individual without decision-making capacity when determining the individual's presumed will, 10,11 but there is ongoing controversy about the significance of nonverbal expressions, especially when they contradict a legally binding advance directive. ...
Objectives
To determine how nursing staff evaluate nonverbal behavior related to hand and tube feeding of residents with dementia. DesignCross-sectional survey. SettingA stratified sample of nurses and nursing assistants in residential nursing homes in a major German city. ParticipantsNursing staff members (N = 131) in 12 nursing homes. MeasurementsNursing staff perception of nonverbal behavior of residents with dementia in response to hand and tube feeding. ResultsNinety-three percent of survey participants considered the nonverbal behavior of residents with advanced dementia crucial for decisions about artificial nutrition and hydration (ANH). The same percentage had at some point encountered residents who did not open their mouths when feeding was attempted. Fifty-three percent of the participants interpreted residents' expressions of pleasure while eating as a will to live. The most frequent interpretation of residents' aversive behavior was discomfort. When residents did not open their mouth during nurse's hand feeding, 41% of the participants inferred a will to die. Conclusion
Most nurses and nursing assistants consider residents' behavior during hand or tube feeding to be important, but their interpretations are heterogeneous. Various professional caregivers assume a will to live or die. Further reflection is necessary to determine how behavioral expressions should be factored into treatment decisions.
... Although the dynamics of caregiving following the onset of dementia have a longitudinal impact on the family and social context of the person with dementia, little has been written about the positive experiences of those with dementia and their caregivers (Allen et al., 2003;Boerner et al., 2004;Cohen et al., 2002). This paper aims to explore the personal, social, cultural, and environmental experiences of one such person with dementia through the lens of disability scholarship in hopes of providing insight into the everyday dealings of people with dementia that can be useful to both therapists and family caregivers, and improve the quality of care and of life for such patients. ...
Patients and caregivers often associate dementia with devastation and a loss of productive contribution to society. People with dementia are often depicted as confused individuals struggling through embarrassing episodes, followed by a loss of independence. The burden and devastation of the diagnosis on the families of people with dementia is exacerbated by their assumption of the role of caregiver with inadequate preparation or training. Disability scholars, in contrast, offer physical and occupational therapists a nontragic view of disability that recognizes the importance of countering the stigma and discrimination that too often accompany dementia. This case example of a woman diagnosed with dementia provides insight into the negative impact of these tragic, dependent views of dementia throughout and following the diagnosis process. Viewing her experiences through the lens of disability scholarship can increase awareness and improve the quality of care on the part of both therapists and family caregivers.
... Korea is one of the fastest aging societies, having about 5,184,000 elderly (about 11% of the total population). [1] The prevalence of elders with dementia is about 9.18% of the total elderly population. [1] By 2050, about 271,000 elderly will be diagnosed with dementia. ...
... [1] The prevalence of elders with dementia is about 9.18% of the total elderly population. [1] By 2050, about 271,000 elderly will be diagnosed with dementia. Dementia incidence rates are expected to increase by 308% with a 503.7% healthcare-cost increase in Korea. ...
... Dementia incidence rates are expected to increase by 308% with a 503.7% healthcare-cost increase in Korea. [1,2] The number of elderly who died from Alzheimer dementia increased from 1,393 (165 death rates per 10,000) in 2009 [3] to 2,700 (260.3 death rates per 10,000) in 2012. Also, deaths in residential settings like nursing homes (NHs) doubled from 4,884 deaths in 2009 [3] to 10,233 deaths in 2012. ...
Background: Korea is one of the fastest aging societies; the number of elderly who die due to Alzheimer dementia has increased dramatically. The benefits of hospice care were recognized in effective pain management, advance-care planning, decreased hospitalization, decreased aggressive treatment, and increased job satisfaction. To estimate life expectancy of residents with dementia precisely is difficult, exacerbating the ability to provide palliative care for residents with dementia. However, the underuse of hospice care in nursing homes (NHs) is a major problem in Korea. Few researchers have identified the needs of people dying with dementia in NHs in Korea. The purpose of this paper was to review and discuss hospice-eligibility assessment tools. Methods: Four tools were available for discussion at the point of investigation: the Functional Assessment Staging Scale, Alzheimer's Hospice Placement Evaluation Scale, Advanced Dementia Prognostic Tool from the U.S. Hospice Medicare guidelines , and Global Deterioration Scale. Results: Major problems are underuse of hospice care and lack of guidelines to assess hospice in patients with dementia in Korea. Conclusion: Successfully categorizing elders with dementia as hospice enrollees in Korea will improve the quality of end-of-life care for increasing numbers of elders with dementia and their family members.
