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Early-onset familial Alzheimer’s disease: do socio-demographic variables differentiate family caregivers on social support, self-efficacy and coping strategies?
Abstract
There is an urgent need to deepen understanding of the particular experience of family caregivers of people with early-onset familial Alzheimer’s disease. In this effort, we aim to identify the socio-demographic variables associated with social support, self-efficacy and coping strategies. Not belonging to the family lineage carrying the disease-causing mutation, having secondary or professional education, and caring for a relative in the early stages of dementia are associated with better coping tools. However, belonging to the family lineage carrying the mutation increases the use of passive coping, escape or emotional discharge, which risks adverse psychological outcomes.
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Introduction
Dementia is currently one of the major causes of disability and dependency among older adults worldwide. Cognitive dysfunction, neuropsychiatric symptoms, somatic complaints, and functional impairment fundamentally affect not only a person living with dementia (PLwD), but also his/her informal caregiver(s), often resulting in a high caregiver burden. A number of variables, including the caregiver's sociodemographic characteristics, the clinical characteristics of PLwD, social support, and the caregiver's personal resources determine the caregiver's burden.
Objectives
The aim of this study was to investigate the associations of caregiver burden in informal caregivers of PLwD with perceived social support, positive caregiving experience, and applying therapeutic communication methods.
Methods
The data were collected from September 2021 to February 2022 among 115 “PLwD—informal caregiver” dyads in the community settings in Slovakia. Measures included the Zarit Burden Interview (ZBI-12), the Oslo Social Support Scale (OSSS-3), the Positive Aspects of Caregiving Scale (PACS), and two questions on applying therapeutic communication methods—reminiscence and validation according to Naomi Feil. The Short IQCODE was used for assessing cognitive decline in PLwD. Pearson's and Spearman's correlations, t-tests, Chi-square, ANOVA, and linear multiple regression analyses were used to analyze the data (IBM SPSS 27).
Results
The mean age of informal caregivers was 54 ± 12.4 years (81.7% of women) and the mean caregiving duration was 4.8 ± 4.8 years. The mean age of PLwD was 80.5 ± 8.3 years (73.0% of women) and their Short IQCODE mean score was 4.1 ± 1.0. Lower caregiving burden was significantly associated with higher perceived social support (β = 0.33, p < 0.01), with higher positive caregiving experience (β = 0.33, p < 0.01), and higher caregiving intensity (β = 0.24, p < 0.05) among informal caregivers of PLwD. The associations between caregiver burden and applying two therapeutic communication methods were not significant.
Conclusions
Implementing psycho-social and educational public health interventions focused on strengthening social support and maintaining positive perceptions of caregiving can help reduce the increased risk of caregiver burden in informal caregivers of older adults with dementia.
Objectives:
Early- and late-onset Alzheimer's disease (EOAD and LOAD) share the same neuropathological traits but show distinct cognitive features. We aimed to explore baseline and longitudinal outcomes of global and domain-specific cognitive function in a well characterized cohort of patients with a biomarker-based diagnosis.
Methods:
In this retrospective cohort study, 195 participants were included and classified according to their age, clinical status, and CSF AD biomarker profile: 89 EOAD, 37 LOAD, 46 young healthy controls (age ≤ 65 years), and 23 old healthy controls (>65 years). All subjects underwent clinical and neuropsychological assessment, neuroimaging, APOE genotyping and lumbar puncture.
Results:
We found distinct neuropsychological profiles between EOAD and LOAD at the time of diagnosis. Both groups showed similar performances on memory and language domains, but the EOAD patients displayed worsened deficits in visual perception, praxis, and executive tasks (p < 0.05). Longitudinally, cognitive decline in EOAD was more pronounced than LOAD in the global outcomes at the expense of these non-amnestic domains. We found that years of education significantly influenced the decline in most of the neuropsychological tests. Besides, the APOE ε4 status showed a significant effect on the decline of memory-related tasks within the EOAD cohort (p < 0.05).
Interpretation:
Age of onset is a main factor shaping the cognitive trajectories in AD patients, with younger age driving to a steeper decline of the non-memory domains. Years of education are related to a transversal decline in all cognitive domains and APOE ε4 status to a specific decline in memory performance in EOAD.
Background
Dementia is a life limiting disease following a progressive trajectory. As carers often become key decision makers, their knowledge of dementia will have health implications for the person living with dementia as well as carer’s psychological wellbeing.
Aim
To explore how sociodemographic factors, health literacy and dementia experience influence family carers knowledge about dementia.
Method
In this cross-sectional, mixed methods study, we interviewed 150 family carers and assessed their dementia knowledge using the Dementia Knowledge Assessment Scale (DKAS). Linear regression analyses were used to examine whether health literacy, previous experiences of dementia, support group attendance and sociodemographic characteristics predicted knowledge. Sixteen carers also completed qualitative interviews which explored unmet information needs. Transcripts and field notes were thematically analysed.
Results
Most participants were partners (47%) or adult children (48%) and cared for someone with severe (32%) or moderate (43%) dementia. Mean DKAS scores were 34.8/50 (SD = 7.0, range = 17–48) reflecting 8/25 incorrect answers. Backwards elimination regression found greater dementia knowledge was associated with greater health literacy for appraising information (coef 3.48, 95% CI (1.38, 5.58); p = 0.001) and more years of education (coef 0.39, 95% CI (0.12, 0.65); p = 0.004). Although not significant, knowledge was slightly lower in those who attended a support group, and a trend was found between ability to understand health information and knowledge. Only 39% accurately identified dementia as life shortening, indicating notable gaps in knowledge. Four qualitative themes were identified; arm yourself with information, ability to steer through information, other experience of dementia can be helpful and the importance of relationships with health care professionals.
Conclusions
In an information age, vast amounts of information are available, but this can bring difficulties. Carers with more years of education and higher health literacy knew more about dementia. Professionals should consider how carers with lower health literacy can be supported through provision of timely, relevant information.
INTRODUCCIÓN: Estudios previos sugieren que la autoeficacia del cuidador puede influir en su actitud hacia el cuidado y en la carga que experimenta. En el contexto colombiano no se cuenta con una escala para medir autoeficacia orientada al cuidado de pacientes con enfermedades neurodegenerativas, específicamente de tipo Alzheimer. OBJETIVOS: Adaptar al contexto colombiano y validar el contenido de la Escala Revisada de Autoeficacia para Cuidadores (Steffen et al. , 2002). METODOLOGÍA: Posterior a la traducción de la escala original, expertos en cuidado y Alzheimer valoraron cada ítem en relación a la dimensión que pretende medir y su pertinencia en el contexto colombiano. Las valoraciones fueron recogidas mediante Panel Delphi en dos circulaciones. Se calculó la media de las respuestas y el porcentaje de acuerdo se midió con el coeficiente de concordancia W de Kendall. RESULTADOS: 13 De los ítems obtuvieron valoraciones medias superiores a 8. Se modificaron 6 ítems y se agregaron dos dimensiones: Cuidado de paciente en cama y Gestión en salud. Se modifica el sistema de respuesta de porcentajes (0%-100%) a una calificación de 0 a 10. CONCLUSIÓN: Se presenta una herramienta para medir Autoeficacia en cuidadores adaptada al contexto colombiano que consta de 27 ítems y 5 dimensiones: Obtención de respiro, Manejo de comportamientos disruptivos del paciente, Manejo de pensamientos molestos acerca del cuidado, Cuidado de paciente en cama y Gestión en salud. Se puede proceder a la validación estadística.
Population aging is among the most important global transformations. Today, 12% of the world population is of age 60 and over and by the middle of this century this segment will represent 21.5%. The increase in population of those aged 80 and over, also referred to as the “oldest old” or the “very elderly”, will be even more pronounced, going from 1.7% of the population to 4.5% within the same period. Compared to European and North American countries, Latin America (LA) is experiencing this unprecedented demographic change at a significantly faster rate. Due to demographic and health transitions, the number of people with dementia will rise from 7.8 million in 2013 to over 27 million by 2050. Nowadays, the global prevalence of dementia in LA has reached 7.1%, with Alzheimer’s Disease (AD) being the most frequent type. This level is similar to those found in developed countries; however, the dementia rate is twice as high as that of the 65–69 years age group in developed countries. In addition, the prevalence and incidence of dementia is higher among illiterate people. Mortality rates due to dementia have risen considerably. The burden and costs of the disease are high and must be covered by patients’ families. The prevention of dementia and the development of long-term care policies and plans for people with dementia in LA, which take into account regional differences and similarities, should be urgent priorities.
Early-onset Alzheimer disease (EOAD), which presents in patients younger than 65 years, has frequently been described as having different features from those of late-onset Alzheimer disease (LOAD). This review analyses the most recent studies comparing the clinical presentation and neuropsychological, neuropathological, genetic, and neuroimaging findings of both types in order to determine whether EOAD and LOAD are different entities or distinct forms of the same entity. We observed consistent differences between clinical findings in EOAD and in LOAD.
Fundamentally, the onset of EOAD is more likely to be marked by atypical symptoms, and cognitive assessments point to poorer executive and visuospatial functioning and praxis with less marked memory impairment. Alzheimer-type features will be more dense and widespread in neuropathology studies, with structural and functional neuroimaging showing greater and more diffuse atrophy extending to neocortical areas (especially the precuneus). In conclusion, available evidence suggests that EOAD and LOAD are 2 different forms of a single entity. LOAD is likely to be influenced by ageing-related processes.
Aim:
The aim of this study was to explore the needs of spouse caregivers of persons with dementia (PWD) and then to compare them based on the PWD's age at disease onset. This data could be used to adapt support programmes to address differences between the two groups.
Method:
Thirty-eight spouse caregivers of persons with late-onset dementia and 40 spouse caregivers of persons with early-onset dementia (PEOD) agreed to participate in the study. The mean ± SD age of the PEOD was 57.6 ± 4.0 years, whereas it was 80.9 ± 5.3 years for the persons with late-onset dementia. Interviews were conducted in the spouse caregivers' homes with only the spouse caregiver. The semi-structured interviews were based on the French version of the Carers Outcome Agreement Tool. The interviews were analyzed in two steps. The first step was qualitative to identify needs. The data were thematically analyzed using QSR NVivo 10. The second step was quantitative to compare the needs depending on the PWD's age at onset. The comparison between the two groups was performed using the χ(2) test.
Results:
The results demonstrated that the majority of needs are the same for the two groups of spouse caregivers. All caregivers need to unwind, to stimulate and pay attention to the PWD, to break the isolation, and to be more prepared and confident. However, some differences emerge, with the spouse caregivers of PEOD expressing a greater number of needs. The caregivers of PEOD seem to have a greater need to interact and maintain contacts with other people (P = 0.001), have more general care-related needs (P = 0.005), require more appropriate care structures (P = 0.037), and need greater assistance with administrative procedures (P = 0.004).
Conclusion:
To improve spouse caregivers' well-being and sense of efficiency, it would be interesting to develop a support programme with a common framework and specific modules depending on the PWD's age at disease onset.
Estudo exploratório-descritivo que objetivou descrever variáveis sociodemográficas e de saúde dos cuidadores de idosos com Alzheimer, associando os cuidados realizados à resiliência. Participaram do estudo 101 cuidadores, maiores de 18 anos, que acompanhavam os idosos em unidade básica e em hospital público, no ano 2009. Foram aplicados questionários para perfil, Inventário de Depressão de Beck e Escala de Resiliência. Realizada análise estatística dos dados. A maioria dos cuidadores eram mulheres, sem depressão, recebia ajuda de outras pessoas para cuidar e possuía alto grau de resiliência. Houve associação significativa da resiliência com as variáveis: grau de parentesco, tratamento médico, uso de medicamentos, cansaço, esgotamento, desânimo e saúde mental do cuidador. Saúde física foi associada, significativamente, à experiência no cuidado, sendo que 82 idosos tinham prejuízos cognitivos graves. O idoso no contexto familiar pode ser beneficiado quando o cuidador é mais resiliente.
Early-onset Alzheimer disease (EOAD), which presents in patients younger than 65 years, has frequently been described as having different features from those of late-onset Alzheimer disease (LOAD). This review analyses the most recent studies comparing the clinical presentation and neuropsychological, neuropathological, genetic, and neuroimaging findings of both types in order to determine whether EOAD and LOAD are different entities or distinct forms of the same entity. We observed consistent differences between clinical findings in EOAD and in LOAD. Fundamentally, the onset of EOAD is more likely to be marked by atypical symptoms, and cognitive assessments point to poorer executive and visuospatial functioning and praxis with less marked memory impairment. Alzheimer-type features will be more dense and widespread in neuropathology studies, with structural and functional neuroimaging showing greater and more diffuse atrophy extending to neocortical areas (especially the precuneus). In conclusion, available evidence suggests that EOAD and LOAD are 2 different forms of a single entity. LOAD is likely to be influenced by ageing-related processes.
Copyright © 2015 Sociedad Española de Neurología. Published by Elsevier España, S.L.U. All rights reserved.
El apoyo social percibido se ha considerado como una variable de gran relevancia en los procesos de salud � enfermedad. Hace referencia a la confianza que tienen los individuos sobre el apoyo social disponible si se necesita. La presente investigación tuvo como propósitos (1) realizar la traducción y adaptación cultural en Colombia del cuestionario del Estudio de Desenlaces Médicos de Apoyo Social (MOS; Sherbourne y Stewart, 1991) y (2) validarlo en población normal para Colombia. El cuestionario MOS es un instrumento que mide apoyo social percibido y fue desarrollado para un estudio de desenlaces de pacientes con enfermedades crónicas en los Estados Unidos. La muestra estuvo conformada por 179 participantes (36.7% hombres y 63.3% mujeres), edad media 38.4 (D.E. 15.2, rango 17 � 86 años), de diferentes ciudades de Colombia. Los resultados reportaron un alfa de Cronbach entre los componentes bastante favorable entre .921 y .736. Se validó la estructura factorial tanto para cuatro como para tres componentes.
Though advances in knowledge and diagnostics make it possible today to identify persons with early-onset dementia or a related cognitive disorder much sooner, little is known about the support needs of the family caregivers of these persons. The aim of this study was to document the unmet support needs of this specific group of caregivers. This knowledge is essential to open avenues for the development of innovative interventions and professional services tailored to their specific needs.
This study was conducted using a mixed research design. Participants were 32 family caregivers in their 50s recruited through memory clinics and Alzheimer Societies in Quebec (Canada). The Family Caregivers Support Agreement (FCSA) tool, based on a partnership approach between caregiver and assessor, was used to collect data in the course of a semi-structured interview, combined with open-ended questions.
The unmet support needs reported by nearly 70% of the caregivers were primarily of a psycho-educational nature. Caregivers wished primarily: (1) to receive more information on available help and financial resources; (2) to have their relatives feel valued as persons and to offer them stimulating activities adjusted to their residual abilities; (3) to reduce stress stemming from their caregiver role assumed at an early age and to have the chance to enjoy more time for themselves; and (4) to receive help at the right time and for the help to be tailored to their situation of caregiver of a young person.
Results show numerous unmet support needs, including some specific to this group of family caregivers. Use of the FCSA tool allowed accurately assessing the needs that emerged from mutual exchanges. Avenues for professional innovative interventions are proposed.
Presenilin 1 (PSEN1) gene mutations are found in 30 to 70% of familial early onset Alzheimer disease (EOAD) cases (onset <60 years). Prevalence of these mutations is highly variable including ethnic differences worldwide. No Peruvian kindred with familial AD (FAD) have been described. Standardized clinical evaluation and cognitive assessment was completed in a Peruvian family with severe EOAD. Clinical course was characterized by very early onset (before age 35 years), progressive cognitive impairment with early memory loss, spatial disorientation and executive dysfunction. We sequenced all exons of PSEN1 in the proband and identified a c.475C>G DNA change resulting in a p.L153V missense mutation in the transmembrane domain 2 of the gene. This mutation is also present in the three additional affected siblings but not in a non-affected family member consistent with segregation of this mutation with the disease. This is the first report of a Peruvian family affected with EOAD associated with a PSEN1 mutation. This same mutation has been reported previously in English and French families, but a novel variants very close to the mutation and ancestry informative markers analysis suggests the mutation might be of Amerindian or African origin in this Peruvian family.
A growing body of literature suggests that the social context of experiencing dementia at a younger age may influence carers' and particularly partners' subjective experience and coping strategies. The current paper aims to explore the coping strategies adopted by six carers in order to adapt to changes in their relationship with their partner with young onset dementia. All were recruited from the north west of England and interpretative phenomenological analysis was used to analyse the data. Four major themes were evident: (1) 'this is not happening': the use of denial as a coping strategy; (2) 'let's not have anymore of this demeaning [treatment]': stigma in young onset dementia; (3) 'I've had to fight every inch': struggling to maintain control of events and emotions; (4) 'what will become of me?': carers' adaptation to loss. Comparisons with existing literature are made and implications for clinical practice are considered.
To date, few studies have examined the experience of spouse caregivers living with a person with early-onset dementia. Moreover, few support resources are offered to these family caregivers and fewer are still tailored to their unique trajectory. The aim of this qualitative study was to document the lived experience of spouse caregivers of young patients in order to inform the development of professional support tailored to their reality. A sample of 12 spouses of persons diagnosed with dementia before the age of 65 participated in semistructured interviews. Six themes emerged from their caregiver trajectories, namely, difficulty managing behavioral and psychological symptoms, long quest for diagnosis, nondisclosure to others and denial of diagnosis, grief for loss of spouse and midlife projects, difficulty juggling unexpected role and daily life responsibilities, and difficulty planning for future. Results open up innovative avenues for the development of interventions geared to facilitating role transition for these spouse caregivers.
Objective: Analyze if the coping strategies used by caregivers influence on the sense of burden. Method: An ex post facto multi-causal complex phenomena, cross. The General Information Questionnaire, the Coping Styles and and the Caregiver Burden Interview were administered to 200 caregivers. Results: When the strategies "Request Information" and "Implementation of actions to resolve the problem" are frecuently used the levels of burden are lower. By contrast, the frecuent used of "Get emotional" leads to higher level of burden. Discussion: The results are consistent with other studies that claim that caregiver stress is related to the assessment he made of the situation and resources available to cope them.
Early-onset Alzheimer’s disease (EOAD) is an increasingly diagnosed condition and is associated with genetic risk factors.
This is one of the first studies exploring the lived experience of siblings of individuals with EOAD. We used structured questionnaires
and semi-structured interviews to assess a broad range of siblings’ experiences with and beliefs about EOAD, including knowledge,
perceptions of personal risk, level of worry, and effects on life decisions. Participants (n = 24) were predominantly female (62.5%) and middle-aged (mean = 56.8years; range 37–83). When asked about risk factors,
genetics was cited most frequently (62.5%). Several potential means of reducing AD risk were endorsed, with 54% reporting
engagement in behaviors for this purpose (e.g., keeping mentally active). Participants ranged widely in their perceived personal
risk of AD (range: 0–100; mean = 35.6%), with higher perceived risk associated with worry about AD (p < 0.01). Understanding siblings’ experiences with EOAD can inform how genetic counselors and healthcare professionals work
with this population to facilitate risk communication and decision-making about testing and healthcare.
Purpose:
To test the effects of different self-efficacy beliefs on caregiver appraisals and depressive symptoms. We hypothesized that self-efficacy has a direct effect on depression while moderating the effects of behavioral problems on both negative (i.e., burden) and positive (i.e., uplifting) appraisals.
Design and methods:
Ninety-nine Chinese caregivers of relatives with Alzheimer's disease responded to measures of self-efficacy, positive gains, burden, depression, and care recipient behavioral problems. Data were analyzed using confirmatory factor analysis and multiple regression.
Results:
Confirmatory factor analysis supported a 3-factor structure for the Revised Scale for Caregiving Self-Efficacy (obtaining respite, responding to disruptive behaviors, and controlling upsetting thoughts). Interaction effects in regression showed that caregivers with higher self-efficacy in controlling upsetting thoughts had more positive gains and less burden when confronted with more behavioral problems. Self-efficacy in obtaining respite had direct effects on burden and depression, and self-efficacy in responding to disruptive behaviors had a direct effect on positive gains, but not moderating effects.
Implications:
The results supported the multidimensional structure of caregiver self-efficacy and showed that efficacy in controlling upsetting thoughts was most important in buffering the effects of behavioral problems on burden and positive gains among Chinese caregivers. Interventions for dementia caregivers may be more effective if more emphasis is given on changing negative thoughts.
Caring for a family member with Alzheimer's disease is associated with increased burden and depression. Effective coping with the hardships and demands of caring may help to sustain the caregiver and lessen the effect of the stressors. The objective of this study was to examine caregivers' coping styles and the relationship with reported levels of burden and depression.
A cross-sectional correlation study was employed. One hundred and seventy-two caregivers of patients suffering from Alzheimer's type dementia participated in the study. All patients were recruited from neurology clinics. The Greek versions of four measuring instruments used were: the Memory and Behaviour Problem Checklist, the Burden Interview, the Centre for Epidemiological studies-Depression scale and the Ways of Coping Questionnaire.
Positive coping is negatively correlated with burden (r = -0.20) and wishful thinking strategies were related positively (r = 0.16). The relation between depression and positive coping strategies is highly significant (p < 0.01), whereas for burden the relation is significant (p < 0.05). Regression analyses showed that positive coping strategies are the most powerful, both in terms of predicting depression levels, and also in terms of moderating the effect of burden on depression.
Positive coping approaches need to be developed by caregivers so as to continue their caring role.
Early-onset Alzheimer's disease (EOAD), defined as affecting those under age 65, afflicts between 200,000 and 500,000 people in the US. EOAD tends to be a fast-progressing and aggressive form of AD. There is a beginning body of research exploring EOAD patients' experience and needs, as well as that of their primary family caregivers, often spouses. However, there has been very little written about the experience and needs of EOAD patients' children, who because of the early onset, and increasing postponement of childbearing, may be latency-aged or in their early teens. This paper reviews existing and related literature in this area, and illustrates the psychosocial impact on children using the case of a 50 year-old father diagnosed with AD and his 16 year-old daughter and 11 year-old son. The need for increased research and program development to address these children's needs is discussed.
Autosomal dominant early-onset Alzheimer's disease (ADEOAD) is associated predominantly with mutations in the genes that codify for presenilin 1 (PSEN1). Only a few ADEOAD families have been reported from Latin America. This is an extended Chilean pedigree affected by ADEOAD along 4 generations. The age of onset of dementia was between 38 and 42 years. Early manifestations were anxiety and depression. Mutation analysis revealed a heterozygous G to C transversion at position 438 of the mRNA in PSEN1 in all affected members. This is the first report of a Chilean family with ADEOAD to include mutation analysis.
We report the clinical, SPET, immunohistochemical and DNA features of an early-onset familial Alzheimer's disease (FAD) in an Argentine pedigree of South American indian ethnic background. Pedigree spans 5 generations comprising more than 110 biological relatives. Clinical data supported the diagnosis of early onset FAD (mean age at onset 38.9 years) in 10 family members, including 3 with pathological confirmation (mean age at death 48.5). The pattern of transmission suggested autosomal dominant inheritance. Prominent features were mood changes, early language impairment, myoclonus, seizures and cerebellar signs. SPET displayed bilateral frontal, temporo-parietal and cerebellar hypoperfusion in early stages and in an asymptomatic member at risk, suggesting that SPET may have predictive value in this family. Immunohistochemistry showed beta amyloid deposits within neuritic plaques and vessel walls and no anti-PrP immunoreactivity. DNA analysis showed no abnormalities in the beta amyloid precursor protein gene. The identification of additional genetic defects in well characterized independent FAD pedigrees will contribute to the understanding of the pathogenesis of Alzheimer's disease.
Objectives
Caregivers of individuals with Alzheimer’s disease and related dementias experience significant burden and adverse outcomes. Enhancing caregiver self-efficacy has the potential to mitigate these negative impacts, yet little is known about its relationship with other aspects of caregiving. This study examined the relationship between self-efficacy and outcomes; identified factors associated with self-efficacy; examined the mediating role of self-efficacy; and analyzed whether there were racial/ethnic differences.
Methods
Data from caregivers (N = 243) were collected from the Caring for the Caregiver Network study. Participants’ level of self-efficacy, depression, burden, and positive aspects of caregiving was assessed using validated measures.
Results
Two self-efficacy subscales predicted caregiver depression, burden, and positive aspects of caregiving. Being White, a spouse, or having a larger social network predicted lower self-efficacy for obtaining respite. Higher income and lower preparedness predicted lower self-efficacy for controlling upsetting thoughts and responding to disruptive behaviors. Self-efficacy for controlling upsetting thoughts mediated the relationship between preparedness and depression along with the relationship between preparedness and burden. Race/ethnicity did not improve model fit.
Conclusion
Self-efficacy plays an important role in caregiver outcomes. These findings indicate that strategies to improve caregiver self-efficacy should be an integral component of caregiver interventions.
Background:
The faster rates of cognitive decline and predominance of atypical forms in early-onset Alzheimer's Disease (EOAD) suggest that neuropsychiatric symptoms could be different in EOAD compared to late-onset AD (LOAD), however, prior studies based on non-biomarker diagnosed cohorts show discordant results. Our goal was to determine the profile of neuropsychiatric symptoms in EOAD and LOAD, in a cohort with biomarker/postmortem-confirmed diagnoses. Additionally, we explored the contribution of co-pathologies.
Methods:
We evaluated 219 participants (135 EOAD, 84 LOAD) meeting NIA-AA criteria for AD (115 amyloid-PET/CSF biomarkers, 104 postmortem diagnosis) at UCSF. The Neuropsychiatric Inventory-Questionnaire (NPI-Q) was assessed at baseline and during follow-up. NPI-Q mean comparisons and regression models adjusting by cognitive (MMSE) and functional status (CDR SoB) were performed to determine the effect of EOAD/LOAD and amnestic/non-amnestic diagnosis on NPI-Q. Regression models assessing the effect of co-pathologies on NPI-Q were performed.
Results:
At baseline, the NPI-Q scores were higher in EOAD compared to LOAD (p<0.05). Longitudinally, regression models showed a significant effect of diagnosis, where EOAD had higher NPI-Q total, anxiety, motor disturbances and nighttime behaviors scores (p<0.05). No differences between amnestics/non-amnestics were found. Argyrophilic grain disease (AGD) co-pathology predicted higher severity of NPI-Q scores in LOAD.
Conclusions:
Anxiety, nighttime behaviors and motor disturbances are more severe in EOAD than LOAD across the disease course. The differential patterns of neuropsychiatric symptoms observed between EOAD/LOAD could suggest a pattern of selective vulnerability extending to the brain's subcortical structures. Further, co-pathologies such as AGD in LOAD may also play a role in increasing neuropsychiatric symptoms.
Background and Objectives
The common and unique psychosocial stressors and adaptive coping strategies of people with young-onset dementia (PWDs) and their caregivers (CGs) are poorly understood. This meta-synthesis used the stress and coping framework to integrate and organize qualitative data on the common and unique psychosocial stressors and adaptive coping strategies employed by PWDs and CGs after a diagnosis of young-onset dementia (YOD).
Research Design and Methods
Five electronic databases were searched for qualitative articles from inception to January 2020. Qualitative data were extracted from included articles and synthesized across articles using taxonomic analysis.
Results
A total of 486 articles were obtained through the database and hand searches, and 322 articles were screened after the removal of duplicates. Sixty studies met eligibility criteria and are included in this meta-synthesis. Four themes emerged through meta-synthesis: 1) common psychosocial stressors experienced by both PWDs and CGs, 2) unique psychosocial stressors experienced by either PWDs or CGs, 3) common adaptive coping strategies employed by both PWDs and CGs, and 4) unique adaptive coping strategies employed by either PWDs or CGs. Within each meta-synthesis theme, subthemes pertaining to PWDs, CGs, and dyads (i.e., PWD and CG as a unit) emerged.
Discussion and Implications
The majority of stressors and adaptive coping strategies of PWDs and CGs were common, supporting the use of dyadic frameworks to understand the YOD experience. Findings directly inform the development of resiliency skills interventions to promote adaptive coping in the face of a YOD diagnosis for both PWDs and CGs.
Aim
Early‐onset dementia (EOD) (defined as dementia onset before age 65) presents specific challenges and issues, adding to the negative impact of dementia on the health‐related quality of life (HRQOL) of both patients and their caregivers. However, very few published studies have specifically compared the HRQOL of caregivers of people with EOD and late‐onset dementia (LOD). This information is critical in allocating and prioritizing scarce health‐care resources. We aimed to assess the HRQOL of primary informal caregivers of community‐dwelling individuals with EOD in Singapore and compare it with that of caregivers of individuals with LOD.
Methods
This was a cross‐sectional study of consecutive patient–caregiver dyads from a tertiary dementia clinic.
Results
No significant differences in disease severity were found between the 111 EOD and 235 LOD patient–caregiver dyads. The mean Mental Component Summary score of the 36‐item Short‐Form Health Survey version 2 was significantly worse in caregivers of EOD patients than in LOD caregivers (mean: 41.42 vs 45.12, P = 0.001), although the mean Physical Component Summary scores were comparable (49.71 vs 49.53, P = 0.934). However, the impact of dementia early onset on caregivers' mental health diminished immediately after adjustment for the disease severity indicators, of which the Neuropsychiatric Inventory Questionnaire distress score was the only significant clinical factor (regression coefficient β = −0.29, P < 0.001). The amount of variability in the HRQOL of the caregivers explained by patient and caregiver factors across all the models was rather small (adjusted R ² = 19.3% for the Mental Composite Score, 5.2% for Physical Composite Score).
Conclusion
Caregivers of EOD patients had worse mental health than LOD caregivers probably because individual with EOD have more behavioural disturbances. This reinforces the indispensable role of managing behavioural problems when caring for a family member with dementia, especially for EOD. HRQOL ideally needs to be assessed based on self‐report rather than inferences from indirect data such as the subjective caregiver burden.
The study of individuals with autosomal dominant Alzheimer's disease affords one of the best opportunities to characterize the biological and cognitive changes of Alzheimer's disease that occur over the course of the preclinical and symptomatic stages. Unifying the knowledge gained from the past three decades of research in the world's largest single-mutation autosomal dominant Alzheimer's disease kindred - a family in Antioquia, Colombia with the E280A mutation in the Presenilin1 gene - will provide new directions for Alzheimer's research and a framework for generalizing the findings from this cohort to the more common sporadic form of Alzheimer's disease. As this specific mutation is virtually 100% penetrant for the development of the disease by midlife, we use a previously defined median age of onset for mild cognitive impairment for this cohort to examine the trajectory of the biological and cognitive markers of the disease as a function of the carriers' estimated years to clinical onset. Studies from this cohort suggest that structural and functional brain abnormalities - such as cortical thinning and hyperactivation in memory networks - as well as differences in biofluid and in vivo measurements of Alzheimer's-related pathological proteins distinguish Presenilin1 E280A mutation carriers from non-carriers as early as childhood, or approximately three decades before the median age of onset of clinical symptoms. We conclude our review with discussion on future directions for Alzheimer's disease research, with specific emphasis on ways to design studies that compare the generalizability of research in autosomal dominant Alzheimer's disease to the larger sporadic Alzheimer's disease population.
El día 17 de junio de 2019 tuvo lugar la defensa de la tesis doctoral de Maritza García Toro que obtuvo la calificación de Sobresaliente cum laude por unanimidad, dirigida por María Cruz Sánchez-Gómez y co-dirigida por Ricardo Canal Bedia. Esta tesis expone la experiencia de un grupo de cuidadores familiares que están a cargo de personas con Alzheimer Precoz hereditario por E280A.
In the growing body of literature dealing with the consequences of family caregiving amongst people with dementia, there are few studies examining the impact of Early-onset Familial Alzheimer’s Disease on caregivers. This study exposes the subjective experience of a group of family caregivers who themselves possess a genetic susceptibility to develop this form of dementia. We interviewed and analyzed the accounts of 27 caregivers belonging to family lineages carrying the E280A mutation for Early-onset Alzheimer’s Disease. We utilized a phenomenological method to analyze these accounts, initially tracking seven theoretical categories (Anxiety, Depression, Burden, Resilience, Self-efficacy, Social Support, and Coping Strategies) and then subsequently two additional categories which emerged (Conceptions about the Disease and Other Vital Experiences Interfering with Caregiving). The results show that caring for a loved one while simultaneously running the risk of developing the same form of Alzheimer’s Disease permeates the caregivers’ experience both in a negative and a positive way. The continuous exposition to emotional stress in these caregivers should be seriously considered as they may be at risk of accelerating the onset of symptoms of Alzheimer’s Disease, while simultaneously, early psychological symptoms of dementia may be masked by the emotional sequelae of caregiving, interfering with early diagnosis. Certainly, support services for the entire family group are suggested.
Objective
The objective of this review is to critically examine, evaluate, and synthesize the literature on resilience in family caregiving for people with dementia.
Methods
A systematic literature review was conducted according to PRISMA guidelines to identify articles which examined resilience and related concepts in family caregiving for people with dementia. The review was based on a systematic search of scholarly databases, to yield peer‐reviewed articles and grey literature, published between 2006 and 2016. Two independent reviewers prescreened the search results and conducted formal assessments and quality appraisals of the retrieved articles.
Results
A total of 13 863 articles were identified by the systematic search, and 52 articles were included in the review. Based on a critical narrative synthesis of the literature, the study proposes a model of resilience for family carers of people with dementia, which incorporates the context of caring, social and cultural characteristics, and psychological dimensions of caring.
Conclusions
The results indicate that there is no single approach to enhancing resilience among family carers of people with dementia. Resilience is a multifaceted response to the caregiving role, and is influenced by a multitude of interrelated factors. However, the factors and resources outlined have been addressed, with limited success in some cases, by psychosocial interventions in the field. While the work conducted to date to develop resilience‐enhancing interventions has been marked with some success, the next wave of carer research could usefully examine ecological perspectives on carer outcomes, including carer resilience.
Background:
A person suffering from dementia needs increasing help from another person, who, in most cases, is a female family member. Times are changing and this traditional role can no longer be maintained.
Aim:
The aim of this research was mainly centred on ascertaining the profile of caregivers and to find out how determinants such as age, sex and educational level and living conditions led people to assume that role.
Methods:
A survey was designed and applied to 925 caregivers (778 of which were analysed) with the collaboration of the Alzheimer's Associations of Andalucía (Spain). Associations gave their ethical approbation for this research prior to the beginning and they informed their members. The participation was entirely voluntary, and caregivers were given the option to withdraw consent.
Results:
Women are the main caregivers in any kind of profile. Males become carers if they are old and the partner of a patient. Males use more external services. Cohabiting and working outside the home increase the use of external support services, and having a higher level of education increases the use of nursing homes. Younger caregivers perceive more intense socio-economic consequences than the general profile.
Conclusions:
Being a caregiver implies limitations to entering the job market and for job promotion. There is a generational gap in the caregiver profile, and more and new support services will be needed. Policymakers should take those into account.
Alzheimer disease (AD) and its stages are clinically defined by the patterns of gradual and progressive decline in cognition and in functional ability with accompanying neuropsychiatric symptoms. The moderate to severe AD (MSAD) stages are particularly important both for their prevalence and for the transitions that occur at these stages. In MSAD, cognitive losses accelerate, neuropsychiatric symptoms increase, and functional autonomy is lost. There is increasing burden on caregivers, who report poorer self-rated health, increased depressive symptoms, and more use of psychoactive medications. The neurologic care of MSAD demands both skilled assessment and management. Beyond the cognitive and neurobehavioral symptom complex in MSAD, a range of other issues also emerge, including gait and movement disorders, nutritional problems, and incontinence. This review addresses the symptoms and staging of AD and emphasizes the key management issues.
Objectives: This review aims to explore the role of self-efficacy (SE) in the health-related quality of life (QoL) of family carers of people with dementia.
Methods: A systematic review of literature identified a range of qualitative and quantitative studies. Search terms related to caring, SE, and dementia. Narrative synthesis was adopted to synthesise the findings.
Results: Twenty-two studies met the full inclusion criteria, these included 17 quantitative, four qualitative, and one mixed-method study. A model describing the role of task/domain-specific SE beliefs in family carer health-related QoL was constructed. This model was informed by review findings and discussed in the context of existing conceptual models of carer adaptation and empirical research. Review findings offer support for the application of the SE theory to caring and for the two-factor view of carer appraisals and well-being. Findings do not support the independence of the negative and positive pathways. The review was valuable in highlighting methodological challenges confronting this area of research, particularly the conceptualisation and measurement issues surrounding both SE and health-related QoL.
Conclusions: The model might have theoretical implications in guiding future research and advancing theoretical models of caring. It might also have clinical implications in facilitating the development of carer support services aimed at improving SE. The review highlights the need for future research, particularly longitudinal research, and further exploration of domain/task-specific SE beliefs, the influence of carer characteristics, and other mediating/moderating variables.
People with early-onset dementia (EOD) and their family carers remain an overlooked population within the policy and practice priorities of community health care. No standard provision of care or support currently exists for those with EOD and the family carer. Yet family members provide the majority of the full-time care required for this progressive, irreversible illness. The aim of this research was to explore the impact of care-giving on family members caring for a relative with EOD. The care-giving experiences identified in this study emphasise the need for improvement in the provision of community and specialised services for people with EOD and family carers. The key themes of this qualitative study were diagnostic problems, impact of care-giving, relationship change and lack of resources. These findings provide key directives for improving community practice, services and support for people with EOD and their family carers.
In contemporary society dementia is socially, culturally, and professionally constructed as an older person's disease. And although the formal definition of dementia has changed over time, its correlation with the aging process has not. Yet, as both clinical contact and the emerging literature base reveal, people younger than 65 years are also diagnosed with this condition. Drawn from encounters with younger people with dementia in the United States (N = 23) and families of younger people with dementia in the United Kingdom (N = 15), this article combines the data sets to explore both sides of the experience and the unique struggles that this group encounters. Qualitative analysis of the data has resulted in the generation of 8 inductively generated themes, namely (1) difficulties in obtaining a diagnosis; (2) issues of self-hood and self-esteem; (3) changing relationships within the family structure; (4) awareness of changes in self; (5) workforce and retirement/financial issues; (6) feelings of extreme social isolation and exclusion; (7) off-time dependency; and (8) lack of meaningful occupation. Using the themes as a heuristic device, the article concludes with 2 sets of evidence-based guidelines that are grouped around the issues of assessment and treatment.
Background: Caregiver burden is the stress experienced as a result of caregiving. Despite the increasing number of Alzheimer's disease (AD) patients who are cared for at home, little has been published about the caregiver burden pertaining to caregivers of early‐onset AD patients. The objective of this study was to examine the difference between the genders with respect to the careburden of early‐onset AD caregivers.
Methods: Twenty‐four patients with early‐onset AD and their caregivers participated in this study. Dementia severity, caregiver's burden, depressive mood and behavioral disturbance were measured and examined.
Results: There was no significant difference between female and male caregivers in terms of careburden or depressive mood. However, when correlations were considered, female caregivers showed significant associations between careburden and the patient's age. Associations between the subscales of careburden were also shown for female caregivers. However. there was no significant correlation between the subscales of careburden and dementia severity and the number of behavioral problems for either female or male caregivers. Depression scores showed only correlations with the subscales of careburden for female caregivers.
Conclusion: The present study examined the difference between the genders with respect to the care burden experienced by caregivers of early‐onset AD patients. The results reinforce those of previous studies in that female caregivers are more likely to experience careburden than male caregivers. The present study indicates the importance of mental health support for female caregivers.
Positive aspects of the caregiving experience may buffer caregivers from the many negative psychological and physical consequences of caregiving. Understanding what factors relate to the recognition of positive aspects of caregiving is important for the enhancement of caregiver well-being. Self-efficacy is a potentially modifiable psychological construct that has been associated with positive thinking, improved control of negative affect, and enhanced motivation.
This study examined the relationship between positive aspects of caregiving and self-efficacy among 57 family members caring for a loved one with Alzheimer's disease. Participant data was gathered through individual interviews conducted as a part of a larger randomized controlled trial of a caregiver intervention.
We found that self-efficacy accounted for a significant percentage of the variance in positive aspects of caregiving after controlling for other factors commonly associated with positive aspects of caregiving including caregiver demographics, care recipient neuropsychiatric symptoms, and caregiver depression.
Our results suggest that high self-efficacy relates to caregivers' perception of positive aspects of the caregiving experience.
This study was conducted to determine the effects of gender on caregiver burden among caregivers of persons with Alzheimer's disease.
Comparative descriptive study.
Factors affecting the burden of female and male caregivers (age, total duration of caregiving, mean duration of daily caregiving, education, income, employment status, age of the patients cared for, and Mini-Mental State Examination [MMSE] and Neuropsychiatric Inventory [NPI] scores) were similar (p > .05). The sample consisted of 120 female and 72 male caregivers of patients with Alzheimer's disease. Data were collected from patients by means of the MMSE and demographic variables, and data from the Caregiver Burden Inventory [CBI] and NPI were obtained from caregivers, as well as from face-to-face interviews using a questionnaire. Descriptive statistics and t-tests were used to describe and analyze data.
Female caregivers had significantly higher scores for caregiver burden than their male counterparts (p= .002). Subscale analysis on the CSI revealed that female caregivers had significantly higher scores for caregiver burden than male caregivers on time dependence (p= .040), developmental (p= .002), physical (p= .001), and social burdens (p= .045). No difference was found with respect to emotional burden (p= .718).
Results of this study suggest that female caregivers are subjected to a higher level of caregiver burden than male caregivers in Turkey. In subscales, female caregivers experienced more burden than male caregivers in the time dependence, developmental, physical, and social burdens. Emotional burden was similar in both genders.
Although caregiver burden has been a much debated issue for many years, it is a relatively new topic in Turkey. In order to provide appropriate care for the patient's and family's cultural values and needs, more studies are needed to be conducted on family members giving care to Alzheimer's patients. It is thought that the findings of the present study will facilitate cross-cultural comparisons and culture-oriented care planning.
The transfer of care from the hospital to home settings has shifted responsibility for the day-to-day care of the long-term, medically complex patient to the family. While family members have always provided care to seriously ill relatives, the care that is expected of family members in today’s health care environment is vastly more complex than it was just 10 years ago. The chronic illness trajectory denotes the fluctuating, variable course of illness phases over time as well as the actions taken by various participants to shape or control that course. The course of the patient’s illness—the illness trajectory—shapes the caregiver’s experience. Three different trajectories of advanced, eventually fatal, chronic illness represent differing patient and family caregiver needs: (1) the long stable period followed by a rather abrupt, defined terminal phase and exemplified by cancer; (2) a trajectory marked by a long course of decline with periodic crises alternating with periods of stability, and with a sudden death, exemplified by congestive heart failure and chronic obstructive pulmonary disease; and (3) a long, slow decline with steadily progressive disability before dying of complications of old age, stroke, or dementia. Patients and families want good pain and symptom management for their loved one; accurate, timely, and adequate information (communication); emotional support from and accessibility to providers; and continuity care across settings. The health care system could be doing more to support family caregivers.
When it comes to dementia, caregiving can have adverse effects on the psychological and physical health of the informal caregiver. As yet, little is known about the impact of caring for a young dementia patient. This review provides an overview of the literature concerning the impact of early onset dementia (EOD) on informal caregivers and on children of EOD patients. The available literature comparing the impact on EOD and late onset dementia (LOD) caregivers will also be provided.
PubMed, Psychinfo, and Cinahl were searched for articles that considered the psychological or psychosocial impact of EOD on informal caregivers and children. The methodological quality of the studies was assessed in order to make better judgments about the value of each article.
Seventeen articles were included, of which the overall methodological quality was limited. The results showed that EOD caregivers experienced high levels of burden, stress, and depression. When compared with LOD caregivers, results were inconclusive. Furthermore, the caregivers of EOD patients experienced a variety of psychosocial problems, including relational problems, family conflict, problems with employment, financial difficulties, and problems concerning diagnosis.
Whether there is a difference in impact between EOD and LOD on caregivers is still unclear. The studies conducted are methodologically too limited to answer this question. Nevertheless, it is clear that EOD caregivers do seem to experience high levels of psychological suffering and specific problems related to their phase in life.
We report the genealogical, clinical and molecular genetic findings of a new family with autosomal dominant early-onset Alzheimer's disease (FAD) discovered in Torino (Italy). Up to now, the pedigree comprises 1500 members, distributed in 8 generations. 22 patients affected with Alzheimer's disease have been identified. The clinical course of the disease was fairly uniform in all the patients. An high incidence of myoclonic jerks and epileptic seizures was found. Molecular genetic studies showed the presence of positive but nonsignificant lod scores between chromosome 21 anonymous DNA markers and the disease. The data obtained from the Torino family were computed together with those of additional 47 pedigrees, with both early-onset and late-onset Alzheimer's disease. A predisposing locus for the disease was found on the pericentromeric region of chromosome 21 only in early-onset FAD pedigrees.
Familial Alzheimer's disease (FAD) is a dominantly inherited condition that may present with an early onset, and myoclonus occurs frequently in the course of the disease. We report clinical and neuropathologic data on 2 large Belgian families with FAD in which we obtained 17 autopsies of the CNS. In family A, each of 11 autopsies had the typical neuropathologic features of Alzheimer's disease (AD), and there were a few cerebellar plaques in the molecular layer. In family B, in addition to the typical characteristics of AD in 6 autopsies, there were numerous amyloid plaques in the cortical cerebellar layers. In both families, we immunostained the amyloid deposits for the A4 protein, and they were negative for prion-associated protein immunoreactivity.
This paper describes the development and evaluation of a brief, multidimensional, self-administered, social support survey that was developed for patients in the Medical Outcomes Study (MOS), a two-year study of patients with chronic conditions. This survey was designed to be comprehensive in terms of recent thinking about the various dimensions of social support. In addition, it was designed to be distinct from other related measures. We present a summary of the major conceptual issues considered when choosing items for the social support battery, describe the items, and present findings based on data from 2987 patients (ages 18 and older). Multitrait scaling analyses supported the dimensionality of four functional support scales (emotional/informational, tangible, affectionate, and positive social interaction) and the construction of an overall functional social support index. These support measures are distinct from structural measures of social support and from related health measures. They are reliable (all Alphas greater than 0.91), and are fairly stable over time. Selected construct validity hypotheses were supported.
A family with familial Alzheimer's disease (FAD) inherited as an apparent autosomal dominant trait is presented. Twelve individuals (6 females; 6 males) in 4 generations were affected. The disease had its onset in the late 30's, early 40's with death by age 50. Although FAD which appears to be transmitted as an autosomal dominant trait is relatively rare, such families must be identified and carefully counselled with respect to recurrence risks for subsequent generations. In this family, there are currently 20 members of Generation IV, aged 15-37, and 9 members of Generation V, aged 1-11. The majority of these individuals appear to have a 50% risk for developing this disease.