Cognitive Decline and the Changing Self in Relationship

2015 ◽  
pp. 61-75
Author(s):  
Darby Morhardt ◽  
Marcia Spira
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Cognitive Decline ◽  
Family Member ◽  
Family Members ◽  
Well Being ◽  
Family Roles ◽  
The Family ◽  
Person With Dementia ◽  
The Impact

When a member of a family is diagnosed with Alzheimer's disease, the impact of the disease reverberates throughout the relationships within the family. This paper explores the challenges and strengths within one family as members manage and cope with Alzheimer's disease. The person with dementia and his family members are individually interviewed and each person explores the consequences of the disease on personal well-being as well as the relationships within the family. The family demonstrates how dementia in one family member demands flexibility in family roles as they navigate life through the challenges of living with dementia.

scholarly journals Validation of the German version of the Family Reported Outcome Measure (FROM-16) to assess the impact of disease on the partner or family member

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Susanne A. Elsner ◽  
Sam S. Salek ◽  
Andrew Y. Finlay ◽  
Anna Hagemeier ◽  
Catherine J. Bottomley ◽  
...  
Keyword(s):  
Factor Analysis ◽  
Family Member ◽  
Internal Consistency ◽  
Outcome Measure ◽  
Test Validity ◽  
Family Members ◽  
German Version ◽  
The Family ◽  
The Difference ◽  
The Impact

Abstract Background The Family Reported Outcome Measure (FROM-16) assesses the impact of a patient’s chronic illness on the quality of life (QoL) of the patient’s partner or family members. The aim of the study was to translate, explore the structure of and validate the FROM-16. Methods The questionnaire was translated from English into German (forward, backward, four independent translators). Six interviews with family members were conducted to confirm the questionnaire for linguistic, conceptual, semantic and experiential equivalence and its practicability. The final German translation was tested for internal consistency, reproducibility and test validity. Criterion validity was tested by correlating the scores of the FROM-16 and the Global Health Scale (GHS). Principal component analysis, factor analysis, and confirmatory factor analysis was used to assess the questionnaire’s structure and its domains. Reliability and reproducibility were tested computing the intraclass correlation coefficient (ICC) using one sample t-test for testing the hypothesis that the difference between the scores was not different from zero. Results Overall, 83 family members (61% female, median age: 61 years) completed the questionnaire at two different times (mean interval: 22 days). Internal consistency was good for the FROM-16 scores (Cronbach’s α for total score = 0.86). In those with stable GHS, the ICC for the total score was 0.87 and the difference was not different from zero (p = 0.262) indicating reproducible results. A bi-factor model with a general factor including all items, and two sub-factors comprising the items from the original 2-factor construct had the best fit. Conclusions The German FROM-16 has good reliability, test validity and practicability. It can be considered as an appropriate and generic tool to measure QoL of a patient’s partner or family member. Due to the presence of several cross-loadings we do not recommend the reporting of the scores of the two domains proposed for the original version of FROM-16 when using the German version. Thus, in reporting the results emphasis should be put on the total score. Trial registration: Retrospectively registered: DRKS00021070.

scholarly journals Neuroticism alters the transcriptome of the frontal cortex to contribute to the cognitive decline and onset of Alzheimer’s disease

2021 ◽  
Vol 11 (1) ◽  
Author(s):  
Céline H. De Jager ◽  
Charles C. White ◽  
David A. Bennett ◽  
Yiyi Ma
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Cognitive Decline ◽  
Brain Regions ◽  
Personality Characteristics ◽  
Tau Pathology ◽  
Postmortem Human Brain ◽  
Brain Transcriptome ◽  
Neo Five Factor Inventory ◽  
The Impact

AbstractAccumulating evidence has suggested that the molecular transcriptional mechanism contributes to Alzheimer’s disease (AD) and its endophenotypes of cognitive decline and neuropathological traits, β-amyloid (Aβ) and phosphorylated tangles (TAU). However, it is unknown what is the impact of the AD risk factors, personality characteristics assessed by the NEO Five-Factor Inventory, on the human brain’s transcriptome. Using postmortem human brain samples from 466 subjects, we found that neuroticism has a significant overall impact on the brain transcriptome (omnibus P = 0.005) but not the other four personality characteristics. Focused on those cognitive decline related gene co-expressed modules, neuroticism has nominally significant associations (P < 0.05) with four neuronal modules, which are more related to PHFtau than Aβ across all eight brain regions. Furthermore, the effect of neuroticism on cognitive decline and AD might be mediated through the expression of module 7 and TAU pathology (P = 0.008). To conclude, neuroticism has a broad impact on the transcriptome of human brains, and its effect on cognitive decline and AD may be mediated through gene transcription programs related to TAU pathology.

scholarly journals Disclosing a Diagnosis of Alzheimer’s Disease: Patient and Family Experiences

2001 ◽  
Vol 28 (S1) ◽  
pp. S67-S71 ◽  
Author(s):  
André P. Smith ◽  
B. Lynn Beattie
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Family Members ◽  
Disease Patient ◽  
Memory Problems ◽  
Family Conference ◽  
The Family ◽  
Disclosure Of Diagnosis ◽  
Assessment Beliefs ◽  
Collection Methods

Background:Informing patients and families about the diagnosis of Alzheimer’s disease (AD) is a complex ethical and practical issue. This qualitative study explores the psychosocial impact of disclosing a diagnosis of AD on patients and family members.Methods:This study identified 14 patients and their accompanying family members undergoing a multidisciplinary assessment for dementia at an outpatient clinic for AD and related disorders. Of the group, three patients had probable AD and five had possible AD as per NINCDS-ADRDAcriteria. Six patients were not demented as per DSM IIIR criteria. Disclosure of diagnosis occurred, in a family conference, within six to eight weeks of the assessment. Data collection methods included observation of the assessment and the family conference as well as in-depth home interviews with family members and with each patient whenever feasible. The interviews were transcribed verbatim and coded for recurrent themes.Results:A total of 40 individuals across 14 families participated in this study. Only two families chose not to have the patient attend the family conference. The disclosure of a diagnosis of probable AD brought on an experience of relief in three families, marking the end of a lengthy period of confusion about the nature of memory problems. Patients diagnosed with possible AD and their families interpreted how indicative the diagnosis was of the presence of the disease with varying degrees of certainty depending on pre-assessment beliefs about the cause of memory problems. In the group diagnosed as not demented, four patients had complaints of forgetfulness likely related to minor depression. The disclosure of a diagnosis of no dementia did not produce the anticipated relief. Two patients continued to believe their memory problems were caused by the early onset of AD or some other “organic” problem.Interpretation:This study reveals that disclosure of the diagnosis of AD to patients and family members is generally beneficial but that there are variations in the understanding of the diagnostic information, particularly in instances where the assessment results are ambiguous.

scholarly journals P-tau and neurodegeneration mediate the effect of β-amyloid on cognition in non-demented elders

2021 ◽  
Vol 13 (1) ◽  
Author(s):  
Ling-Zhi Ma ◽  
Hao Hu ◽  
Zuo-Teng Wang ◽  
Ya-Nan Ou ◽  
Qiang Dong ◽  
...  
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Cognitive Decline ◽  
Mediating Effect ◽  
Total Effect ◽  
Independent Effect ◽  
Carrier Status ◽  
Mediation Effects ◽  
Β Amyloid ◽  
The Impact

Abstract Background There are many pathological changes in the brains of Alzheimer’s disease (AD) patients. For many years, the mainstream view on the pathogenesis of AD believes that β-amyloid (Aβ) usually acts independently in addition to triggering functions. However, the evidence now accumulating indicates another case that these pathological types have synergies. The objective of this study was to investigate whether effects of Aβ pathology on cognition were mediated by AD pathologies, including tau-related pathology (p-tau), neurodegeneration (t-tau, MRI measurements), axonal injury (NFL), synaptic dysfunction (neurogranin), and neuroinflammation (sTREM2, YKL-40). Methods Three hundred seventy normal controls (CN) and 623 MCI patients from the ADNI (Alzheimer’s Disease Neuroimaging Initiative) database were recruited in this research. Linear mixed-effects models were used to evaluate the associations of baseline Aβ with cognitive decline and biomarkers of several pathophysiological pathways. Causal mediation analyses with 10,000 bootstrapped iterations were conducted to explore the mediation effects of AD pathologies on cognition. Results Tau-related pathology, neurodegeneration, neuroinflammation are correlated with the concentration of Aβ, even in CN participants. The results show that age, gender, and APOE ε4 carrier status have a moderating influence on some of these relationships. There is a stronger association of Aβ with biomarkers and cognitive changes in the elderly and females. In CN group, Aβ pathology is directly related to poor cognition and has no mediating effect (p < 0.05). In mild cognitive impairment, tau-related pathology (26.15% of total effect) and neurodegeneration (14.8% to 47.0% of total effect) mediate the impact of Aβ on cognition. Conclusions In conclusion, early Aβ accumulation has an independent effect on cognitive decline in CN and a tau, neurodegeneration-dependent effect in the subsequent cognitive decline in MCI patients.

Making the Right Connections: Maximizing Lexical Generalization in Lexical Impairments in Primary Progressive Aphasia and Alzheimer's Disease

2021 ◽  
pp. 1-16
Author(s):  
Ashleigh Beales ◽  
Anne Whitworth ◽  
Jade Cartwright ◽  
Peter K. Panegyres ◽  
Robert T. Kane
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Family Members ◽  
Primary Progressive Aphasia ◽  
Lexical Retrieval ◽  
Connected Speech ◽  
Progressive Aphasia ◽  
Primary Progressive ◽  
Word Classes ◽  
The Impact

Purpose Positive intervention effects following lexical retrieval interventions are increasingly reported with people with progressive language impairments; however, generalization of therapy gains are less frequently evident and less well understood. This study sought to explore the impact of specific therapy ingredients on generalization outcomes. Method Twelve participants with progressive lexical retrieval deficits (four each with semantic variant primary progressive aphasia, logopenic variant primary progressive aphasia, and Alzheimer's disease, amnestic presentation) and their family members participated in a 6-week intervention that aimed to increase access to different word classes (nouns, verbs, and adjectives) through a strategic self-cueing approach. Generalization was actively facilitated through strategy practice in connected speech. Repeated baselines of picture naming and connected speech were conducted prior to intervention and repeated immediately post and at 6 weeks following intervention. Results All three diagnostic groups showed significant improvements in naming performance post-intervention for all word classes and for both treated and untreated items, demonstrating consistent treatment effectiveness and generalization at the word level. No changes in the informativeness or efficiency of connected speech were found. Conclusions Despite heterogeneity across participants, widespread evidence of both treatment effects and generalization to untreated items was found for all diagnostic groups and word classes. The consistent within-level generalization across all groups is explored here in relation to optimization of strategy use through incorporation of cognitive scaffolds, strategic practice at the connected speech level, and the inclusion of family members. The absence of across-level generalization to connected speech is also explored. Supplemental Material https://doi.org/10.23641/asha.14219771

Impact on the family

2021 ◽  
pp. 111-125
Author(s):  
Veronica Dussel ◽  
Barbara Jones
Keyword(s):  
Social Care ◽  
Family Members ◽  
Well Being ◽  
Family Unit ◽  
Health And Social Care ◽  
The Family ◽  
Threatening Condition ◽  
Life Threatening ◽  
Limiting Condition ◽  
The Impact

In this chapter, we will focus on the importance of caring for the family of a child with a life-limiting condition (LLC) or life-threatening condition as a unit, each of the family members being integral to the well-being and care of the others. We recognize that the family unit itself is embedded within a wider context including the health and social care system, and more broadly within its society and culture. We discuss the concept of family, exploring the impact of having a child with an LLC, and how families adjust to this. We then expand on considerations about how to offer effective and timely support and help. We have included parents’ narratives with the aim of adding depth to the discussion, and in recognition of the truth of families’ own experiences.

scholarly journals The Impact of Experience with a Family Member with Alzheimer’s Disease on Views about the Disease across Five Countries

2012 ◽  
Vol 2012 ◽  
pp. 1-9 ◽  
Author(s):  
Robert J. Blendon ◽  
John M. Benson ◽  
Elizabeth M. Wikler ◽  
Kathleen J. Weldon ◽  
Jean Georges ◽  
...  
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Family Member ◽  
Public Spending ◽  
The United States ◽  
Direct Experience ◽  
Fatal Disease ◽  
The Public ◽  
Educational Campaigns ◽  
The Impact

The objective of this paper is to understand how the public’s beliefs in five countries may change as more families have direct experience with Alzheimer’s disease. The data are derived from a questionnaire survey conducted by telephone (landline and cell) with 2678 randomly selected adults in France, Germany, Poland, Spain, and the United States. The paper analyzes the beliefs and anticipated behavior of those in each country who report having had a family member with Alzheimer’s disease versus those who do not. In one or more countries, differences were found between the two groups in their concern about getting Alzheimer’s disease, knowledge that the disease is fatal, awareness of certain symptoms, and support for increased public spending. The results suggest that as more people have experience with a family member who has Alzheimer’s disease, the public will generally become more concerned about Alzheimer’s disease and more likely to recognize that Alzheimer’s disease is a fatal disease. The findings suggest that other beliefs may only be affected if there are future major educational campaigns about the disease. The publics in individual countries, with differing cultures and health systems, are likely to respond in different ways as more families have experience with Alzheimer’s disease.

The Impact of Amyloid-β or Tau on Cognitive Change in the Presence of Severe Cerebrovascular Disease

2020 ◽  
Vol 78 (2) ◽  
pp. 573-585
Author(s):  
Hyemin Jang ◽  
Hee Jin Kim ◽  
Yeong Sim Choe ◽  
Soo-Jong Kim ◽  
Seongbeom Park ◽  
...  
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Cognitive Impairment ◽  
Cognitive Decline ◽  
Interaction Effect ◽  
Significant Interaction ◽  
Amyloid Β ◽  
Cognitive Change ◽  
Significant Interaction Effect ◽  
The Impact

Background: As Alzheimer’s disease (AD) and cerebral small vessel disease (CSVD) commonly coexist, the interaction between two has been of the considerable interest. Objective: We determined whether the association of Aβ and tau with cognitive decline differs by the presence of significant CSVD. Methods: We included 60 subcortical vascular cognitive impairment (SVCI) from Samsung Medical Center and 82 Alzheimer’s disease-related cognitive impairment (ADCI) from ADNI, who underwent Aβ (florbetaben or florbetapir) and tau (flortaucipir, FTP) PET imaging. They were retrospectively assessed for 5.0±3.9 and 5.6±1.9 years with Clinical Dementia Rating-sum of boxes (CDR-SB)/Mini-Mental State Examination (MMSE). Mixed effects models were used to investigate the interaction between Aβ/tau and group on CDR-SB/MMSE changes. Results: The frequency of Aβ positivity (45% versus 54.9%, p = 0.556) and mean global FTP SUVR (1.17±0.21 versus 1.16±0.17, p = 0.702) were not different between the two groups. We found a significant interaction effect of Aβ positivity and SVCI group on CDR-SB increase/MMSE decrease (p = 0.013/p < 0.001), and a significant interaction effect of global FTP uptake and SVCI group on CDR-SB increase/MMSE decrease (p < 0.001 and p = 0.030). Finally, the interaction effects of regional tau and group were prominent in the Braak III/IV (p = 0.001) and V/VI (p = 0.003) not in Braak I/II region (p = 0.398). Conclusion: The association between Aβ/tau and cognitive decline is stronger in SVCI than in ADCI. Therefore, our findings suggested that Aβ positivity or tau burden (particularly in the Braak III/IV or V/VI regions) and CSVD might synergistically affect cognitive decline.

Session 8: Family Roles, Communication, and Support

2020 ◽  
pp. 95-102
Author(s):  
Bryan D. Carter ◽  
William G. Kronenberger ◽  
Eric L. Scott ◽  
Christine E. Brady
Keyword(s):  
Family Communication ◽  
Family Systems ◽  
Family System ◽  
Family Members ◽  
Parenting Behaviors ◽  
Family Roles ◽  
Family Dynamic ◽  
Family Situation ◽  
The Family ◽  
The Impact

Session 8 is again focused primarily on family communication and dynamics for the purposes of identifying and addressing parenting behaviors and parent–teen dynamics that may unwittingly undermining teen confidence in becoming more independent in managing their illness and lifestyle. The clinician engages the family in a discussion of parental and teen roles within the family system and an examination of the impact of the teen’s illness on family members’ roles. Behavioral family systems concepts of “misguided support” and “strong beliefs” that family members hold, but that inadvertently may be serving to maintain a dependent or even overprotective/enmeshed family dynamic, are introduced and applied to the family situation, along with strategies for moving these dynamics in a more independence-engendering direction.

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