scholarly journals 325 Exploring the Complexity of Dementia and Loneliness in Ireland

2019 ◽  
Vol 48 (Supplement_3) ◽  
pp. iii17-iii65
Author(s):  
Irene Hartigan ◽  
Nicola Cornally ◽  
Tony Foley ◽  
Suzanne Timmons ◽  
Gyunghee Park ◽  
...  
Keyword(s):  
Social Engagement ◽  
Sense Of Self ◽  
Cultural Influences ◽  
Community Dwelling ◽  
Human Contact ◽  
People With Dementia ◽  
Risk Of Mortality ◽  
Self Worth ◽  
One Year ◽  
Meaningful Relationships

Abstract Background Dementia and loneliness are both complex phenomenon’s that impact on both mental and physical health. Research has identified that loneliness can increase a person’s risk of mortality as much as smoking or alcohol consumption. People with dementia are at particular risk of loneliness and social isolation. This can negatively impact on a person with dementia’s health. To effectively address loneliness in dementia, we must first understand how people with dementia experience loneliness. Methods Interviews were conducted with people living with dementia. Participants comprised of eight community-dwelling individuals, aged 55 years and older (mean = 63.8; range = 55-77), who were each diagnosed with dementia at least one year prior to interview (range = 1.16 – >5 years). Interviews were conducted in participants’ homes using a semi-structured format and lasted between 37-74 minutes. Results Three key themes emerged: the importance of maintaining meaningful relationships, maintaining independence and socio-cultural influences on individual perceptions of loneliness and dementia. The results emphasise the importance of maintaining both a sense of self and meaningful relationships with others post-diagnosis for individuals who identified themselves as “not lonely”. People living with dementia reported that the maintenance of social connection aids in fostering a sense of self-worth and self-management, which in turn mitigates feelings of loneliness. The majority of participants existing social connections with others was established prior to their diagnosis, although the maintenance of these relationships may have required an adjustment of their premorbid routines and method of social engagement. Conclusion Human contact and a meaningful relationship are superior in preventing loneliness. Individual feelings of loneliness or lack thereof are not directly correlated to the coping mechanisms most commonly employed by individuals with dementia. Further exploration is need to understand how people with dementia, who live at home, perceive or experience loneliness.

Stress as Experienced by People with Dementia: An Interpretative Phenomenological Analysis

Dementia ◽  
2017 ◽  
Vol 18 (4) ◽  
pp. 1427-1445 ◽  
Author(s):  
Barbara K Sharp
Keyword(s):  
Interpretative Phenomenological Analysis ◽  
Sense Of Self ◽  
Phenomenological Analysis ◽  
People With Dementia ◽  
Health And Social Care ◽  
Self Worth ◽  
And Coping ◽  
Study Participants ◽  
Person With Dementia ◽  
The Impact

Health and social care research on stress in dementia has predominantly considered the stress experienced by family and professional carers. Focus on the person with dementia has frequently laid emphasis on the impact of stress-related behaviour on others and how such behaviour might be ‘managed’. This paper describes a qualitative study which gives voice to people with dementia on the subject of stress and responds to the need for a better understanding of stress as it is experienced by people with dementia themselves. An interpretative phenomenological analysis was conducted on data collected from a purposive sample of people diagnosed with varying types of dementia from across Scotland. Discussions across five focus groups consisting of 21 participants with dementia in total generated data which was audio and video recorded, and analysed thematically. Five key themes emerged, described in the participants’ own words, which were: (1) ‘Something’s torn, your life’s torn’; (2) ‘Families can bring stress’; (3) ‘It’s the stress of living with dementia’; (4) ‘A whole new set of rules’; and (5) ‘It’s our lives and we’ll get it under control ourselves’. These themes reflect experiences of loss, challenges to one’s sense of self, relationship dynamics, living with the symptoms of dementia, learning to do things differently and establishing coping mechanisms that provide control. Study participants illustrated individual potential for adapting and coping with some of the most stressful aspects of living with dementia, challenging assumptions of inevitable fixed decline and progressive vulnerability to stress. Participants describe a process of recovery in their perceptions of self-worth, purpose and value in life following diagnosis.

scholarly journals Incidence of and Risk Factors for Missing Events Due to Wandering in Community-dwelling Older People with Dementia and Mild Cognitive Impairment

2021 ◽  
Author(s):  
seungwon Jeong ◽  
Takao Suzuki ◽  
Kiyoko Miura ◽  
Takashi Sakurai
Keyword(s):  
Risk Factors ◽  
Cognitive Impairment ◽  
Mild Cognitive Impairment ◽  
Recurrence Rate ◽  
Community Dwelling ◽  
Disease Assessment ◽  
People With Dementia ◽  
One Year ◽  
The One

Abstract BackgroundThe burden of missing incidents is not only on the person with dementia, but also on their family, neighbors, and community. The extent to which dementia-related wandering and missing incidents occur in the community has not been evaluated thoroughly in the published literature. Therefore, we evaluated the incidence of and risk factors for missing events due to wandering.MethodsWe conducted a non-randomized prospective one-year follow-up cohort study based on symptom registration with missing events due to wandering as the endpoint. In the first consultation, 374 patients with dementia or mild cognitive impairment (MCI) and their caregivers who visited the National Center for Geriatrics and Gerontology in Japan were included. The incidence and recurrence rate of missing events were calculated. Participants were divided into (those with) dementia and (those with) MCI. Patients' basic and medical information was documented at baseline and after one year of follow-up. Furthermore, analysis of variance and logistic regression analysis were performed to clarify the risk factors associated with the missing event.ResultsAmong the 236 patients with dementia enrolled, 65 (27·5%) had a previous missing event at baseline, and 28 had a missing event during the one-year follow-up period (recurrence rate of 43·1%). Of the 171 who did not have a previous missing event at baseline, 23 had a missing event during the one-year follow-up period (incidence rate of 13·5%). The scores of Mini-Mental State Examination (MMSE), Dementia Behavior Disturbance Scale (DBD), and Alzheimer's Disease Assessment Scale (ADAS) were statistically significant as the risk factors for the incidence of wandering leading to a missing event (p<0·05).ConclusionsPrevention of missing event due to wandering requires focused attention on changes in the MMSE, DBD, ADAS scores, and the development of a social environment to support family caregivers.

scholarly journals Impact of COVID-19 on ‘living well’ with mild-to-moderate dementia in the community: findings from the IDEAL cohort

2021 ◽  
Author(s):  
Linda Clare ◽  
Anthony Martyr ◽  
Laura D. Gamble ◽  
Claire Louise Pentecost ◽  
Rachel Collins ◽  
...  
Keyword(s):  
Sense Of Self ◽  
Social Contact ◽  
Community Dwelling ◽  
Everyday Activities ◽  
Living Well ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Negative Impacts ◽  
The Impact ◽  
The Ideal

BackgroundNegative impacts of the COVID-19 pandemic on people with dementia have been widely-documented, but most studies have relied on carer reports and few have compared responses to information collected before the pandemic.ObjectiveWe aimed to explore the impact of the pandemic on community-dwelling individuals with mild-to-moderate dementia and compare responses with pre-pandemic data.MethodsDuring the second wave of the pandemic we conducted structured telephone interviews with 173 people with dementia and 242 carers acting as informants, all of whom had previously participated in the IDEAL cohort. Where possible we benchmarked responses against pre-pandemic data.ResultsSignificant perceived negative impacts were identified in cognitive and functional skills and ability to engage in self-care and manage everyday activities, along with increased levels of loneliness and discontinuity in sense of self and a decline in perceived capability to ‘live well’. Compared to pre-pandemic data there were lower levels of pain, depression and anxiety, higher levels of optimism, and better satisfaction with family support. There was little impact on physical health, mood, social connections and relationships, or perceptions of neighbourhood characteristics.ConclusionEfforts to mitigate negative impacts of pandemic-related restrictions and restore quality of life could focus on reablement to address the effects on participation in everyday activities, creating opportunities for social contact to reduce loneliness, and personalised planning to reconnect people with their pre-COVID selves. Such efforts may build on the resilience demonstrated by people with dementia and carers in coping with the pandemic.

scholarly journals Predictors of the one-year-change in depressiveness in informal caregivers of community-dwelling people with dementia

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Lara Kürten ◽  
Nikolas Dietzel ◽  
Peter L. Kolominsky-Rabas ◽  
Elmar Graessel
Keyword(s):  
Social Inclusion ◽  
Informal Caregivers ◽  
Multiple Regression Model ◽  
Community Dwelling ◽  
Subjective Burden ◽  
The People ◽  
People With Dementia ◽  
One Year ◽  
The One ◽  
Person With Dementia

Abstract Background The care of people with dementia is usually carried out by their family members, which can cause objective und subjective burden and raise their risk of depressiveness. Thus, the aim of this study is to identify predictors of the change in depressiveness of informal caregivers over 1 year in order to be able to derive hypotheses for interventions that promise success. Methods The Bavarian Dementia Survey (BayDem) is a multi-center, longitudinal study conducted at three different sites in Bavaria, Germany. Participants were people with dementia and their informal caregivers. Data was collected at baseline and after 12 months by standardized face-to-face interviews in cooperation with local players. The informal caregivers’ depressiveness was assessed with the WHO-5. Data was also collected on the people with dementia’s cognition (MMSE), behavioral symptoms (NPI) and comorbidities (Charlson Comorbidity Index) as well as caregivers’ social inclusion (LSNS), time spent on care and care contribution (RUD). For statistical analysis, a multiple regression model was used. Results The data of 166 people with dementia and their informal caregivers was analyzed. Of the latter, 46% were categorized as “likely depressed”. The change in depressiveness over a year was significantly predicted by baseline depressiveness as well as an increase in the time informal caregivers spent supervising the person with dementia. Conclusions Informal caregivers of people with dementia are at high risk of depression. The time spent supervising the person with dementia has a significant impact on increasing depressiveness. This highlights the importance of support services to provide the informal caregiver with relief and possibly reduce depressiveness.

scholarly journals Impact of COVID-19 on ‘living well’ with mild-to-moderate dementia in the community: findings from the IDEAL cohort

2021 ◽  
Author(s):  
Linda Clare ◽  
Anthony Martyr ◽  
Laura D Gamble ◽  
Claire Pentecost ◽  
Rachel Collins ◽  
...  
Keyword(s):  
Sense Of Self ◽  
Social Contact ◽  
Community Dwelling ◽  
Everyday Activities ◽  
Living Well ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Negative Impacts ◽  
The Impact ◽  
The Ideal

Abstract Background Negative impacts of the COVID-19 pandemic on people with dementia have been widely-documented, but most studies have relied on carer reports and few have compared responses to information collected before the pandemic. Objective We aimed to explore the impact of the pandemic on community-dwelling individuals with mild-to-moderate dementia and compare responses with pre-pandemic data. Methods During the second wave of the pandemic we conducted structured telephone interviews with 173 people with dementia and 242 carers acting as informants, all of whom had previously participated in the IDEAL cohort. Where possible we benchmarked responses against pre-pandemic data. Results Significant perceived negative impacts were identified in cognitive and functional skills and ability to engage in self-care and manage everyday activities, along with increased levels of loneliness and discontinuity in sense of self and a decline in perceived capability to ‘live well’. Compared to pre-pandemic data there were lower levels of pain, depression and anxiety, higher levels of optimism, and better satisfaction with family support. There was little impact on physical health, mood, social connections and relationships, or perceptions of neighbourhood characteristics. Conclusion Efforts to mitigate negative impacts of pandemic-related restrictions and restore quality of life could focus on reablement to address the effects on participation in everyday activities, creating opportunities for social contact to reduce loneliness, and personalised planning to reconnect people with their pre-COVID selves. Such efforts may build on the resilience demonstrated by people with dementia and carers in coping with the pandemic.

scholarly journals Impact of COVID-19 on ‘Living Well’ with Mild-to-Moderate Dementia in the Community: Findings from the IDEAL Cohort

2021 ◽  
pp. 1-16
Author(s):  
Linda Clare ◽  
Anthony Martyr ◽  
Laura D. Gamble ◽  
Claire Pentecost ◽  
Rachel Collins ◽  
...  
Keyword(s):  
Sense Of Self ◽  
Social Contact ◽  
Community Dwelling ◽  
Everyday Activities ◽  
Living Well ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Negative Impacts ◽  
The Impact ◽  
The Ideal

Background: Negative impacts of the COVID-19 pandemic on people with dementia have been widely-documented, but most studies have relied on carer reports and few have compared responses to information collected before the pandemic. Objective: We aimed to explore the impact of the pandemic on community-dwelling individuals with mild-to-moderate dementia and compare responses with pre-pandemic data. Methods: During the second wave of the pandemic, we conducted structured telephone interviews with 173 people with dementia and 242 carers acting as informants, all of whom had previously participated in the IDEAL cohort. Where possible, we benchmarked responses against pre-pandemic data. Results: Significant perceived negative impacts were identified in cognitive and functional skills and ability to engage in self-care and manage everyday activities, along with increased levels of loneliness and discontinuity in sense of self and a decline in perceived capability to ‘live well’. Compared to pre-pandemic data, there were lower levels of pain, depression, and anxiety, higher levels of optimism, and better satisfaction with family support. There was little impact on physical health, mood, social connections and relationships, or perceptions of neighborhood characteristics. Conclusion: Efforts to mitigate negative impacts of pandemic-related restrictions and restore quality of life could focus on reablement to address the effects on participation in everyday activities, creating opportunities for social contact to reduce loneliness, and personalized planning to reconnect people with their pre-COVID selves. Such efforts may build on the resilience demonstrated by people with dementia and carers in coping with the pandemic.

Outside in: a critically compassionate approach to education for civic engagement

2017 ◽  
Vol 12 (3) ◽  
pp. 295-309 ◽  
Author(s):  
Thomas Lucey ◽  
Mary Frances Agnello ◽  
James Duke Laney
Keyword(s):  
Civic Engagement ◽  
Social Engagement ◽  
Teacher Candidates ◽  
Design Methodology ◽  
Sense Of Self ◽  
Content Type ◽  
Social Controls ◽  
Self Worth

Purpose The purpose of this paper is to describe a method for preparing teacher candidates to educate for civic engagement through a philosophy of critical compassion. Design/methodology/approach It begins with an examination of citizenship’s contextual relevancy and the importance of developing citizens who possess the adaptability to practice compassion in a variety of contexts. It provides a series of example art-based discussion activities founded on the principles of introspection and community. Such activities offer potential to foster a compassionate sense of personal self-worth with candidates through a sense of inner care. Findings Candidates develop a sense of self-appreciation sourced independently from patterns of social controls and promoting an empathy toward other people that they, in turn, can develop in their students. Originality/value These processes offer potential to empower candidates to view citizenship as a process of social engagement that respects the equitable contribution of all participants.

scholarly journals Associations Between Social Engagement and Physical Activity Among Community-Dwelling Older Adults With Dementia

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 283-283
Author(s):  
Aya Yoshikawa ◽  
Matthew Smith ◽  
Marcia Ory
Keyword(s):  
Physical Activity ◽  
Physical Functioning ◽  
Social Engagement ◽  
Chronic Conditions ◽  
Living Arrangement ◽  
Cross Sectional Study ◽  
Community Dwelling ◽  
Organized Activities ◽  
Cross Sectional ◽  
People With Dementia

Abstract People with dementia (PWD) tend to experience loneliness and physical inactivity, which increases their risk of negative health outcomes such as depression and declined physical functioning. Research indicates the link between supportive social environments and physical activity (PA), yet this association is not fully studied among PWD. This cross-sectional study investigated associations between social engagement and moderate (i.e. walking for exercise) and vigorous PA among PWD. A subset sample of community-dwelling Medicare beneficiaries in the 2015 National Health and Aging Trends Study, representing PWD including possible (n = 779) and probable (n = 902) dementia, were analyzed using survey-weighted logistic regression analysis. All analyses were controlled for sociodemographic characteristics, living arrangement, physical functioning, and the number of chronic conditions. The majority of participants was 80 years or older (52.5%), female (53.1%), White (67.4%), had a high school or higher education (64.0%), and two or more chronic conditions (74.1%). Living alone (OR = 1.60, 95%CI 1.22, 2.10), knowing their community well (OR = 1.56, 95%CI 1.12, 2.16), and going out for enjoyment (OR = 1.93, 95%CI 1.37, 2.73) were associated with moderate PA. In addition to going out for enjoyment (OR = 2.40, 95%CI 1.65, 3.53), attending organized activities (OR = 1.97, 95%CI 1.15, 3.39) and working as a volunteer (OR = 1.63, 95%CI 1.04, 2.57) were associated with vigorous PA. Findings suggest that enjoyable activities and community familiarity may facilitate walking behavior among PWD. Integrating events and volunteer activities within communities is encouraged for supporting active living among PWD.

Perceived Voice Disorders in Older Adults and Impact on Social Interactions

2021 ◽  
pp. 1-8
Author(s):  
Connie K. Porcaro ◽  
Clare Singer ◽  
Boris Djokic ◽  
Ali A. Danesh ◽  
Ruth Tappen ◽  
...  
Keyword(s):  
Older Adults ◽  
Social Interactions ◽  
Social Engagement ◽  
Leisure Activities ◽  
Treatment Strategies ◽  
Voice Disorders ◽  
Community Dwelling ◽  
Vocal Performance ◽  
Older Individuals ◽  
Cross Sectional

Purpose Many aging individuals, even those who are healthy, report voice changes that can impact their ability to communicate as they once did. While this is commonly reported, most do not seek evaluation or management for this issue. The purpose of this study was to investigate the prevalence and differences in voice disorders in older adults, along with the effect of fatigue on their social interactions. Method This is a cross-sectional investigation of a community-dwelling sample of individuals aged 60 years or older. Participants completed the Questionnaire on Vocal Performance, the Social Engagement Index subset “Engagement in Social or Leisure Activities,” and the Fatigue Severity Scale. Results Results indicated 32.5% of the 332 participants reported symptoms of voice problems with no difference found between male and female respondents. A slight increase in report of voice problems was noted with each year of age. Participants who self-reported voice problems indicated less interaction in social activities involving communication than those who did not. Finally, as severity of self-reported voice problems increased, an increase was reported by the same individuals for signs of fatigue. Conclusions Voice problems and resulting decreased social interaction are commonly experienced by older individuals. Voice symptoms in older adults have been found to benefit from evidence-based treatment strategies. It is critical to provide education to encourage older individuals to seek appropriate evaluation and management for voice issues through a speech-language pathologist or medical professional.

scholarly journals Perceived and objective availability of green and blue spaces and quality of life in people with dementia: results from the IDEAL programme

2021 ◽  
Author(s):  
Yu-Tzu Wu ◽  
◽  
Linda Clare ◽  
Ian Rees Jones ◽  
Sharon M. Nelis ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Urban Areas ◽  
Positive Association ◽  
Deprivation Level ◽  
Community Dwelling ◽  
Future Research ◽  
Interaction Terms ◽  
Perceived Availability ◽  
People With Dementia

Abstract Purpose The aim of this study was to investigate the associations between quality of life and both perceived and objective availability of local green and blue spaces in people with dementia, including potential variation across rural/urban settings and those with/without opportunities to go outdoors. Methods This study was based on 1540 community-dwelling people with dementia in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) programme. Quality of life was measured by the Quality of Life in Alzheimer’s Disease (QoL-AD) scale. A list of 12 types of green and blue spaces was used to measure perceived availability while objective availability was estimated using geographic information system data. Regression modelling was employed to investigate the associations of quality of life with perceived and objective availability of green and blue spaces, adjusting for individual factors and deprivation level. Interaction terms with rural/urban areas or opportunities to go outdoors were fitted to test whether the associations differed across these subgroups. Results Higher QoL-AD scores were associated with higher perceived availability of local green and blue spaces (0.82; 95% CI 0.06, 1.58) but not objective availability. The positive association between perceived availability and quality of life was stronger for urban (1.50; 95% CI 0.52, 2.48) than rural residents but did not differ between participants with and without opportunities to go outdoors. Conclusions Only perceived availability was related to quality of life in people with dementia. Future research may investigate how people with dementia utilise green and blue spaces and improve dementia-friendliness of these spaces.

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