scholarly journals Development of a Dementia-Focused End-of-Life Planning Tool: The LEAD Guide (Life-Planning in Early Alzheimer’s and Dementia)

2019 ◽  
Vol 3 (3) ◽  
Author(s):  
Kara Dassel ◽  
Rebecca Utz ◽  
Katherine Supiano ◽  
Sara Bybee ◽  
Eli Iacob
Keyword(s):  
Older Adults ◽  
Clinical Practice ◽  
Focus Groups ◽  
End Of Life ◽  
Family Caregivers ◽  
Early Stage ◽  
Healthy Adults ◽  
Planning Tool ◽  
Healthy Older Adults ◽  
Life Planning

Abstract Background and Objectives To address the unique characteristics of Alzheimer’s disease and related dementias (ADRD) that complicate end-of-life (EOL), we created, refined, and validated a dementia-focused EOL planning instrument for use by healthy adults, those with early-stage dementia, family caregivers, and clinicians to document EOL care preferences and values within the current or future context of cognitive impairment. Research Design and Methods A mixed-method design with four phases guided the development and refinement of the instrument: (1) focus groups with early-stage ADRD and family caregivers developed and confirmed the tool content and comprehensiveness; (2) evaluation by content experts verified its utility in clinical practice; (3) a sample of healthy older adults (n = 153) and adults with early-stage ADRD (n = 38) completed the tool, whose quantitative data were used to describe the psychometrics of the instrument; and (4) focus groups with healthy older adults, family caregivers, and adults with early-stage ADRD informed how the guide should be used by families and in clinical practice. Results Qualitative data supported the utility and feasibility of a dementia-focused EOL planning tool; the six scales have high internal consistency (α = 0.66–0.89) and high test–rest reliability (r = .60–.90). On average, both participant groups reported relatively high concern for being a burden to their families, a greater preference for quality over length of life, a desire for collaborative decision-making process, limited interest in pursuing life-prolonging measures, and were mixed in their preference to control the timing of their death. Across disease progression, preferences for location of care changed, whereas preferences for prolonging life remained stable. Discussion and Implications The LEAD Guide (Life-Planning in Early Alzheimer’s and Dementia) has the potential to facilitate discussion and documentation of EOL values and care preferences prior to loss of decisional capacity, and has utility for healthy adults, patients, families, providers, and researchers.

scholarly journals End-of-Life Plans for African American Older Adults With Dementia

2018 ◽  
Vol 35 (10) ◽  
pp. 1314-1322 ◽  
Author(s):  
Karen O. Moss ◽  
Nancy L. Deutsch ◽  
Patricia J. Hollen ◽  
Virginia G. Rovnyak ◽  
Ishan C. Williams ◽  
...  
Keyword(s):  
Older Adults ◽  
African American ◽  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Life Care ◽  
Life Planning ◽  
Care Recipients ◽  
Life Plans ◽  
End Of Life Planning

African Americans are perceived to be least likely of all racial and ethnic groups to prepare for the end of life. However, verbal plans for the end of life are of particular importance to this population and may help understand why they are less likely to possess a formal end-of-life care planning document. The purpose of this study was to determine the number of formal and/or informal end-of-life care plans that existed among a convenience sample of African American older adults with dementia. For this descriptive study, data were collected from African American family caregivers (N = 65) of older adults with dementia. Descriptive statistics were conducted. Caregivers in this sample reported high rates of formal and/or informal end-of-life plans for their care recipients. Agency forms (power of attorney, health-care surrogate, or guardianship forms) had been obtained by 74% of the care recipients, while 63% of them possessed a formal end-of-life care planning document. All combined, 88% of the caregivers possessed at least 1 document or verbal information concerning end-of-life care for their care recipient or at least there was an assigned surrogate. Although limited, these findings reflect more end-of-life planning in this population than previous studies reported and could improve the quality of end-of-life outcomes in this population by giving health-care providers increased understanding of African American end-of-life planning preferences. This may, in turn, help the providers to inform and educate these care recipients and their family caregivers.

Processing gender stereotypes in dementia patients and older healthy adults: a self-paced reading study

2019 ◽  
Vol 5 (s2) ◽  
Author(s):  
Daniel Müller-Feldmeth ◽  
Katharina Ahnefeld ◽  
Adriana Hanulíková
Keyword(s):  
Older Adults ◽  
Young Adults ◽  
Sentence Processing ◽  
Gender Stereotypes ◽  
Time Course ◽  
Healthy Adults ◽  
Control Group ◽  
Healthy Older Adults ◽  
Dementia Patients ◽  
Age Related

AbstractWe used self-paced reading to examine whether stereotypical associations of verbs with women or men as prototypical agents (e.g. the craftsman knits a sweater) are activated during sentence processing in dementia patients and healthy older adults. Effects of stereotypical knowledge on language processing have frequently been observed in young adults, but little is known about age-related changes in the activation and integration of stereotypical information. While syntactic processing may remain intact, semantic capacities are often affected in dementia. Since inferences based on gender stereotypes draw on social and world knowledge, access to stereotype information may also be affected in dementia patients. Results from dementia patients (n = 9, average age 86.6) and healthy older adults (n = 14, average age 79.5) showed slower reading times and less accuracy in comprehension scores for dementia patients compared to the control group. While activation of stereotypical associations of verbs was visible in both groups, they differed with respect to the time-course of processing. The effect of stereotypes on comprehension accuracy was visible for healthy adults only. The evidence from reading times suggests that older adults with and without dementia engage stereotypical inferences during reading, which is in line with research on young adults.

scholarly journals ‘The Future is Probably Now’: Understanding of illness, uncertainty and end‐of‐life discussions in older adults with heart failure and family caregivers

2019 ◽  
Vol 22 (6) ◽  
pp. 1331-1340 ◽  
Author(s):  
Jennifer Im ◽  
Susanna Mak ◽  
Ross Upshur ◽  
Leah Steinberg ◽  
Kerry Kuluski
Keyword(s):  
Heart Failure ◽  
Older Adults ◽  
End Of Life ◽  
Family Caregivers ◽  
Illness Uncertainty ◽  
The Future ◽  
Understanding Of Illness

scholarly journals 2400 How have characteristics of end-of-life family caregiving changed from 1999 to 2015? Preliminary results from two waves of nationally representative data

2018 ◽  
Vol 2 (S1) ◽  
pp. 82-82
Author(s):  
Judith Vick ◽  
Jennifer Wolff
Keyword(s):  
Older Adults ◽  
End Of Life ◽  
Family Caregivers ◽  
Family Caregiving ◽  
Physical Strain ◽  
Term Care ◽  
Care Survey ◽  
Nationally Representative ◽  
Over Time

OBJECTIVES/SPECIFIC AIMS: Family members are often critical in the delivery of hands-on care and decisions about care for persons approaching end-of-life (EOL). Prompted by concerns about the poor quality and high costs of care at the EOL, recent delivery reform efforts—such as the growth of hospice and palliative care—have been directed at improving EOL care for both patients and family. Trends of the characteristics of EOL family caregivers and care recipients over time have not been well described. The goal of this study is to evaluate changes in EOL family caregiving from 1999 to 2015. METHODS/STUDY POPULATION: This study uses reconciled data from two nationally representative surveys and their linked caregiver surveys: the 1999 wave of the National Long-Term Care Survey (NLTCS) and the Informal Care Survey (ICS), and the 2015 wave of the National Health and Aging Trends Study (NHATS) and the National Survey of Caregiving (NSOC). RESULTS/ANTICIPATED RESULTS: Crude analysis shows that older adults living in the community and receiving help from family caregivers in the last year of life were significantly better educated (72% with greater than 12 years of education vs. 46%), and more diverse (78% White vs. 89%) in 2015 compared with 1999. Family caregivers in the last year of life were less likely to be female in 2015 compared with 1999 (74% vs. 68%, NS) and significantly less likely to be spouses (45% vs. 38%) in 2015. In 2015, a significantly greater proportion of older adults received help with five or more activities of daily living (47% vs. 34%), but family caregivers reported significantly lower levels of caregiving-associated distress: financial strain (80% reporting none in 2015 vs. 53%), emotional (51% vs. 39%), and physical strain (70% vs. 45%). In addition, a significantly greater proportion of EOL family caregivers used respite care in 2015 compared to 1999 (15% vs. 4%). DISCUSSION/SIGNIFICANCE OF IMPACT: Changes in the experience of EOL family caregiving may be impossible to capture in studies of single interventions, but tracking nationally representative trends can be used as an indicator of broader changes that take place cumulatively over time. Although studies of this nature cannot identify causal mechanisms of change, they are important to monitor long-term impact of program implementation and to guide future research, policy, and resource allocation.

Possible selves and illness: A comparison of individuals with Parkinson's disease, early-stage Alzheimer's disease, and healthy older adults

2003 ◽  
Vol 27 (1) ◽  
pp. 1-11 ◽  
Author(s):  
Leslie D. Frazier ◽  
Victoria Cotrell ◽  
Karen Hooker
Keyword(s):  
Alzheimer’S Disease ◽  
Older Adults ◽  
Parkinson’S Disease ◽  
Alzheimer's Disease ◽  
Parkinson's Disease ◽  
Possible Selves ◽  
Early Stage ◽  
Healthy Older Adults ◽  
Patient Groups ◽  
The Impact

This study examined how future self-representations are affected by two different chronic illnesses, one focused on cognitive losses, early-stage Alzheimer's disease (AD), and one focused on physical losses, Parkinson's disease (PD). The impact of illness on possible selves (perceptions of self in the future) was made salient by a comparison with healthy older adults in order to better understand developmental issues in later life. Findings show that although there were no differences in the total number of domains reported by the groups, specific domains were reported differently by patient groups and all domains were likely to become infused with illness. As expected, patient groups had less self-efficacy and lower outcome expectancies for their future selves, and PD patients reported less distance from their feared selves. Although these findings are intuitive, this is the first empirical effort to document the impact of illness on older adults' self-representations. Group differences are explained in terms of disease context, and the importance of possible selves and self-regulatory functions as therapeutic mechanisms for adaptation to illness are emphasised.

scholarly journals Introducing CatchU TM : A Novel Multisensory Tool for Assessing Patients’ Risk of Falling †

2021 ◽  
Author(s):  
Jeannette R. Mahoney ◽  
Claudene J. George ◽  
Joe Verghese
Keyword(s):  
Older Adults ◽  
Clinical Practice ◽  
Multisensory Integration ◽  
Screening Tool ◽  
Mobility Limitations ◽  
Healthy Older Adults ◽  
Research Perspective ◽  
Increased Risk ◽  
Risk Of Falls ◽  
Cognitive Attention

To date, only a few studies have investigated the clinical translational value of multisensory integration. Our previous research has linked the magnitude of visual-somatosensory integration (measured behaviorally using simple reaction time tasks) to important cognitive (attention) and motor (balance, gait, and falls) outcomes in healthy older adults. While multisensory integration effects have been measured across a wide array of populations using various sensory combinations and different neuroscience research approaches, multisensory integration tests have not been systematically implemented in clinical settings. We recently developed a step-by-step protocol for administering and calculating multisensory integration effects to facilitate innovative and novel translational research across diverse clinical populations and age-ranges. In recognizing that patients with severe medical conditions and/or mobility limitations often experience difficulty traveling to research facilities or joining time-demanding research protocols, we deemed it necessary for patients to be able to benefit from multisensory testing. Using an established protocol and methodology, we developed a multisensory falls-screening tool called CatchU TM (an iPhone app) to quantify multisensory integration performance in clinical practice that is currently undergoing validation studies. Our goal is to facilitate the identification of patients who are at increased risk of falls and promote physician-initiated falls counseling during clinical visits (e.g., annual wellness, sick, or follow-up visits). This will thereby raise falls-awareness and foster physician efforts to alleviate disability, promote independence, and increase quality of life for our older adults. This conceptual overview highlights the potential of multisensory integration in predicting clinical outcomes from a research perspective, while also showcasing the practical application of a multisensory screening tool in routine clinical practice.

scholarly journals “It’s Like a Death Sentence but It Really Isn’t” What Patients and Families Want to Know About Hospice Care When Making End-of-Life Decisions

2019 ◽  
Vol 37 (9) ◽  
pp. 721-727
Author(s):  
Channing E. Tate ◽  
Grace Venechuk ◽  
Elinor J. Brereton ◽  
Pilar Ingle ◽  
Larry A. Allen ◽  
...  
Keyword(s):  
Focus Groups ◽  
End Of Life ◽  
Family Caregivers ◽  
Terminal Illness ◽  
Hospice Care ◽  
Death Sentence ◽  
Theory Approach ◽  
Snowball Sampling ◽  
The Right ◽  
Grounded Theory Approach

Background: Hospice is underutilized, due to both lack of initiation from patients and late referral from clinicians. Prior research has suggested the reasons for underuse are multifactorial, including clinician and patient lack of understanding, misperceptions about the nature of hospice care, and poor communication during end-of-life discussions about hospice care. Little is known about the decisional needs of patients and families engaging in hospice decision-making. Objectives: To understand the decisional needs of patients and families making decisions about hospice care. Methods: We conducted focus groups with family caregivers and hospice providers and one-on-one interviews with patients considering or enrolled in hospice care. We identified participants through purposeful and snowball sampling methods. All interviews were transcribed verbatim and analyzed using a grounded theory approach. Results: Four patients, 32 family caregivers, and 27 hospice providers participated in the study. Four main themes around decisional needs emerged from the interviews and focus groups: (1) What is hospice care?; (2) Why might hospice care be helpful?; (3) Where is hospice care provided?; and (4) How is hospice care paid for? Discussion: Hospice may not be the right treatment choice for all with terminal illness. Our study highlights where patients’ and families’ understanding could be enhanced to assure that they have the opportunity to benefit from hospice, if they so desire.

scholarly journals DEVELOPMENT OF AN END-OF-LIFE PLANNING TOOL SPECIFIC TO PERSONS WITH DEMENTIA

2018 ◽  
Vol 2 (suppl_1) ◽  
pp. 435-435
Author(s):  
K B Dassel ◽  
K Supiano ◽  
R Utz ◽  
S Bybee
Keyword(s):  
End Of Life ◽  
Planning Tool ◽  
Life Planning ◽  
End Of Life Planning

scholarly journals FAMILY CAREGIVERS’ ADVANCE CARE PLANNING FOR COGNITIVELY IMPAIRED OLDER ADULTS: SERVICE PROVIDERS’ PERSPECTIVES

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S237-S237
Author(s):  
Hyunjin Noh ◽  
Temilade A Aladeokin
Keyword(s):  
Older Adults ◽  
End Of Life ◽  
Family Caregivers ◽  
Advance Care Planning ◽  
Service Providers ◽  
Cognitively Impaired ◽  
Care Planning ◽  
Barriers To Access ◽  
Advance Care ◽  
Surrogate Decision

Abstract An increasing number of family caregivers face challenges of advance care planning (ACP) for their cognitively impaired older adults. The purpose of this study was to understand service providers’ views of ACP knowledge and needs among such family caregivers. Purposive sampling was used to recruit 10 service providers who serve older adults and their family caregivers in community settings of West Alabama. Individual, face-to-face interviews were conducted guided by a semi-structured questionnaire, asking about their experiences with and views of family caregivers’ ACP for their older adults. Thematic analysis of the qualitative data revealed several findings: family caregivers’ lack of knowledge about ACP and end-of-life care, discomfort in end-of-life discussions, uncertainty about their older adult’s end-of-life preferences, frustration with the surrogate decision-making role, family conflicts in ACP process, and logistical barriers to access ACP resources. Tailored services should be developed to address these barriers to promote ACP among this population.

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