scholarly journals Necessidades de Cuidados e Recurso aos Serviços na Demência: Avaliação Inicial da Coorte Portuguesa no Estudo Actifcare

2019 ◽  
Vol 32 (5) ◽  
pp. 355 ◽  
Author(s):  
Manuel Gonçalves-Pereira ◽  
Maria J. Marques ◽  
Conceição Balsinha ◽  
Alexandra Fernandes ◽  
Ana Sá Machado ◽  
...  
Keyword(s):  
Psychological Distress ◽  
Unmet Needs ◽  
Community Support ◽  
Community Dwelling ◽  
Formal Care ◽  
Needs For Care ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Formal Services ◽  
Timely Access

Introduction: People with dementia and their relatives should have timely access to formal care in the community. The EU-Actifcare project analysed access to and use of formal services, as related to unmet needs for care. We describe the cohort study implementation and baseline results in Portugal, with a focus on needs for care and service use assessments.Material and Methods: Our convenience sample consisted of 66 dyads of community-dwelling people with mild to moderate dementia and no significant use of formal services, and their informal carers. Measures included the Camberwell Assessment of Need for the Elderly and Resources Utilization in Dementia.Results: People with dementia had unmet needs (mean 1.1; SD 1.7), mainly regarding company (23%), psychological distress (20%), and daily activities (14%). Family caregivers spent 150 minutes/day (median) providing support, and 44% had psychological distress unmet needs. Problems with access to or use of formal services, when present, were frequently due to attitudes or lack of knowledge of any or both members of the dyad.Discussion: The recruitment process was challenging, since the inclusion criteria were restrictive. Not claiming generalizability, we recruited a typical sample of Portuguese people with mild to moderate dementia and no significant formal community support. Levels and type of unmet needs found in some participants would call for formal support, were it not for problems regarding access or use.Conclusion: There are difficulties regarding timely access and effective use of formal care in dementia, along with relevant unmet needs.

scholarly journals Carers’ experiences of timely access to and use of dementia care services in eight European countries

2019 ◽  
pp. 1-18 ◽  
Author(s):  
Hannah Jelley ◽  
Liselot Kerpershoek ◽  
Frans Verhey ◽  
Claire Wolfs ◽  
Marjolein de Vugt ◽  
...  
Keyword(s):  
Service Use ◽  
Study Participant ◽  
Formal Care ◽  
Structured Interviews ◽  
Care Services ◽  
People With Dementia ◽  
Timely Access ◽  
Mixed Feelings ◽  
Barriers To Service ◽  
Person With Dementia

AbstractTimely access to care services is crucial to support people with dementia and their family carers to live well. Carers of people with dementia (N = 390), recruited from eight countries, completed semi-structured interviews about their experiences of either accessing or not using formal care services over a 12-month period in the Access to Timely Formal Care (Actifcare) study. Participant responses were summarised using content analysis, categorised into clusters and frequencies were calculated. Less than half of the participants (42.3%) reported service use. Of those using services, 72.8 per cent reported timely access and of those not using services 67.2 per cent were satisfied with this situation. However, substantial minorities either reported access at the wrong time (27.2%), or feeling dissatisfied or mixed feelings about not accessing services (32.8%). Reasons for not using services included use not necessary yet, the carer provided support or refusal. Reasons given for using services included changes in the condition of the person with dementia, the service's ability to meet individual needs, not coping or the opportunity to access services arose. Facilitators and barriers to service use included whether participants experienced supportive professionals, the speed of the process, whether the general practitioner was helpful, participant's own proactive attitude and the quality of information received. To achieve timely support, simplified pathways to use of formal care services are needed.

The Portuguese Participation in the Actifcare (Access to Timely Formal Care in Dementia) European Study: Preliminary Results of Systematic Reviews, Qualitative and Quantitative Data

2017 ◽  
Vol 41 (S1) ◽  
pp. S652-S652
Author(s):  
M. Gonçalves-Pereira ◽  
M.J. Marques ◽  
C. Balsinha ◽  
T. Reis ◽  
A. Machado ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Social Services ◽  
Systematic Reviews ◽  
Unmet Needs ◽  
Community Support ◽  
Community Services ◽  
Formal Care ◽  
Care Hospital ◽  
Primary Care Hospital

IntroductionIn the context of untimely access to community formal services, unmet needs of persons with dementia (PwD) and their carers may compromise their quality of life.Objectives/aimsThe Actifcare EU-JPND project (www.actifcare.eu) focuses on access to and (non) utilization of dementia formal care in eight countries (The Netherlands, Germany, United Kingdom, Sweden, Norway, Ireland, Italy, Portugal), as related to unmet needs and quality of life. Evaluations included systematic reviews, qualitative explorations, and a European cohort study (PwD in early/intermediate phases and their primary carers; n = 453 days; 1 year follow-up). Preliminary Portuguese results are presented here (FCT-JPND-HC/0001/2012).Methods(1) extensive systematic searches on access to/utilization of services; (2) focus groups of PwD, carers and health/social professionals; (3) prospective study (n = 66 days from e.g., primary care, hospital outpatient services, Alzheimer Portugal).ResultsIn Portugal, nationally representative data is scarce regarding health/social services utilization in dementia. There are important barriers to access to community services, according to users, carers and professionals, whose views not always coincide. The Portuguese cohort participants were 66 PwD (62.1% female, 77.3 ± 6.2 years, 55.5% Alzheimer's/mixed subtypes, MMSE 17.8 ± 4.8, CDR1 89.4%) and 66 carers (66.7% female, 64.9 ± 15.0 years, 56.1% spouses), with considerable unmet needs in some domains.ConclusionsAll Actifcare milestones are being reached. The consortium is now analyzing international differences in (un) timely access to services and its impact on quality of life and needs for care (e.g., formal community support is weaker in Portugal than in many European countries). National best-practice recommendations in dementia are also in preparation.Abstract submitted on behalf of the Actifcare Eu-JPND consortium.Disclosure of interestThe authors have not supplied their declaration of competing interest.

Perceptions of reciprocity in friendship by community dwelling people with mild to moderate dementia

Dementia ◽  
2017 ◽  
Vol 18 (6) ◽  
pp. 2107-2121 ◽  
Author(s):  
Jennifer Perion ◽  
Victoria Steiner
Keyword(s):  
Social Interaction ◽  
Qualitative Study ◽  
College Education ◽  
Phenomenological Approach ◽  
Community Dwelling ◽  
Psychological Benefits ◽  
Face To Face ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Positive Social Interaction

Positive social interaction is important for people with dementia, providing emotional and psychological benefits. Friendships may retain more reciprocal balance than caregiver relationships, which often become one-sided. This qualitative study investigates the meaning that friendship has for people with dementia, and how reciprocity relates to positive social identity. Individuals experiencing dementia were recruited from programs sponsored by a Midwest chapter of The Alzheimer’s Association. In a face-to-face, one-time interview, participants were asked to share their perceptions about reciprocal friendship. Participants included 10 individuals who were primarily White, averaged 76 years old, with at least some college education. The data were analyzed using a phenomenological approach that revealed five themes of reciprocal friendship: recognizing the importance of longevity in friendship, helping one another is a normal part of friendship, feeling “alive” through the give and take in friendship, knowing somebody is there for them, and seeking security through friendship.

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 The effect of long-term, group-based physical, cognitive and social activities on physical performance in elderly, community-dwelling people with mild to moderate dementia

Dementia ◽  
2018 ◽  
Vol 19 (6) ◽  
pp. 1829-1843
Author(s):  
Tina Junge ◽  
Hans Kromann Knudsen ◽  
Hanne Kaae Kristensen
Keyword(s):  
Activities Of Daily Living ◽  
Physical Performance ◽  
Daily Living ◽  
Community Dwelling ◽  
Repeated Measure ◽  
Social Activities ◽  
Walk Test ◽  
People With Dementia ◽  
Moderate Dementia

Background Elderly people with dementia are known to be less physically active compared with elderly, healthy people, emphasizing the need for interventions in order to maintain a high level of independence in activities of daily living. The aim was to evaluate the effect of long-term, group-based rehabilitation including physical activity on physical performance in elderly, community-dwelling people with mild to moderate dementia. Methods A quasi-experimental study of 18 elderly, community-dwelling people, diagnosed with mild to moderate dementia, participated in an ongoing rehabilitation programme based on integrated physical, cognitive and social activities. The outcome measure was physical performance: the 30-second sit-to-stand test, Guralnik balance test, 10-metre walking speed test, timed 6-metre walk test and a timed dual task walk test. The repeated measure ANOVA was used to analyse any overall differences between related means. Results No significant effect of time was found for the five outcome measures during the entire period. The variation in the estimate of most outcome scores was higher within subjects than between subjects during the period. Profile plots illustrated that three of the participants, who experienced severe cognitive deterioration, markedly declined in all physical performance tests. Conclusion The expected, progressive deterioration in physical performance was delayed in a small group of home-dwelling people with mild to moderate dementia participating in long-term, group-based rehabilitation. Long-term, group-based rehabilitation may have the overall potential to delay deterioration in activities of daily living performance in home-dwelling people with mild to moderate dementia; however, more studies with larger samples are needed to confirm the findings of this study.

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.

Portugal

2019 ◽  
pp. 219-230
Author(s):  
Manuel Gonçalves-Pereira ◽  
António Leuschner
Keyword(s):  
Primary Care ◽  
Health Service ◽  
Social Care ◽  
Dementia Care ◽  
Governmental Organizations ◽  
Non Governmental Organizations ◽  
People With Dementia ◽  
Health And Social Care ◽  
Formal Services ◽  
Timely Access

Dementia care in Portugal presents a mixed balance of strengths and important problems and challenges. This chapter begins by highlighting the scarcity of health service data on dementia, within a rapidly changing and complex array of health and social care systems. Public, private, and third-sector services are not integrated enough to fully meet the needs of people with dementia and their families. Despite examples of good standards in dementia care, some complex challenges still need tackling. Portugal does not have a National Dementia Plan, although formal efforts are being made and a general strategy has been proposed. The chapter briefly discusses leading issues, while highlighting that any selection of goals and the feasibility of achieving them are constrained by a shortage of resources. Taking the need to improve timely diagnosis and integrated formal services as an example, the exact role of primary care is one of the primary topics for discussion. In short, there are three aspects which Portugal does well in terms of dementia care: (1) every person with dementia has access to emergency services and, in principle, to primary care services within the public National Health Service; (2) there are examples of high-quality standards in clinical dementia care, mainly in urban centres, and an increasing interest from the social sector, non-governmental organizations, and private institutions in community or institutional social care; and (3) there is increasing interest in dementia-related service research, as well as in psycho-geriatric training. For the future, first, primary care should be more involved in early diagnosis of dementia and its appropriate disclosure, as well as in other areas, e.g. treatment monitoring in collaboration with specialized care, counselling and support, and monitoring caregivers’ health. Second, the complex bio-psycho-social needs in dementia should be better met through improvement of: timely access to community formal services or specialized accommodation when necessary; ‘dementia-friendly’ communities and health/social units (e.g. general hospitals, given the multimorbidity in people with dementia); management of behavioural and psychological symptoms of dementia (with more emphasis on non-pharmacological approaches, and less on antipsychotics); informal caregivers’ support, ensuring minimum standards of information, counselling, psycho-education, and other family interventions; and legal procedures, access to new technologies, and decent end-of-life care. Finally, gaps should be bridged between health and social care, fostering care coordination and case management in every phase of dementia (with standardization of dementia care processes, e.g. definition of the roles of professionals).

scholarly journals Formal and informal care for people with dementia: variations in costs over time

2003 ◽  
Vol 23 (3) ◽  
pp. 303-326 ◽  
Author(s):  
JUSTINE SCHNEIDER ◽  
ANGELA HALLAM ◽  
M. KAMRUL ISLAM ◽  
JOANNA MURRAY ◽  
BETH FOLEY ◽  
...  
Keyword(s):  
Social Services ◽  
Residential Care ◽  
Informal Care ◽  
Living Arrangements ◽  
Data Sets ◽  
Formal Care ◽  
Formal Service ◽  
People With Dementia ◽  
Formal Services ◽  
Over Time

The services used by people with dementia and their carers were measured at three time points over 17 months. This analysis is unusual in that both informal care and formal inputs were costed. The costs estimates for informal inputs developed here may be applied to other data sets. Two hypotheses to explain the inter-relationship between informal and formal care inputs, substitution and supplementation, were compared in analysing the data. This paper explores the variations in costs according to the living arrangements of the people with dementia, by level of dependency and over time, and finds systematic differences. The costs of the inputs from co-resident carers consistently exceeded the costs of formal services, with informal care constituting up to 40 per cent of the total costs burden for dementia care. When informal inputs were included, non-domestic residential care emerged as less, not more, costly than care in the community. There was a shift in costs burden from health services to social services over time as more people moved into non-domestic settings. Multivariate analyses identified several predictors of informal and formal care costs: physical disability, level of cognitive impairment, living in non-domestic settings, and formal care provided. Non-domestic care predicted lower inputs of both formal and informal services. Dementia level was positively associated with informal inputs. Physical frailty was associated with more formal care, but less informal care. More formal service inputs predicted higher informal care inputs. There is evidence of supplementation of informal care by formal services in the early stages of care, followed by substitution as the person with dementia enters residential care.

scholarly journals Effects of a culturally adapted group based Montessori based activities on engagement and affect in Chinese older people with dementia: a randomized controlled trial

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Helen Yue-lai Chan ◽  
Yee-man Yau ◽  
Si-fan. Li ◽  
Ka-shi Kwong ◽  
Yuen-yu Chong ◽  
...  
Keyword(s):  
Controlled Trial ◽  
Intervention Group ◽  
Community Dwelling ◽  
Group Activities ◽  
People With Dementia ◽  
Culturally Adapted ◽  
Moderate Dementia ◽  
Montessori Method ◽  
Chinese Older People ◽  
To Receive

Abstract Background The Montessori Method underpinned by the principle of person-centered care has been widely adopted to design activities for people with dementia. However, the methodological quality of the existing evidence is fair. The objectives of this study are to examine the feasibility and effects of a culturally adapted group-based Montessori Method for Dementia program in Chinese community on engagement and affect in community-dwelling people with dementia. Methods This was a two-arm randomized controlled trial. People who were aged 60 years or over and with mild to moderate dementia were recruited and randomly assigned to the intervention group to receive Montessori-based activities or the comparison group to receive conventional group activities over eight weeks. The attendance rates were recorded for evaluating the feasibility. The Menorah Park Engagement Scale and the Apparent Affect Rating Scale were used to assess the engagement and affect during the activities based on observations. Generalized Estimating Equation model was used to examine the intervention effect on the outcomes across the sessions. Results A total of 108 people with dementia were recruited. The average attendance rate of the intervention group (81.5%) was higher than that of the comparison group (76.3%). There was a significant time-by-group intervention effect on constructive engagement in the first 10 minutes of the sessions (Wald χ2 = 15.21–19.93, ps = 0.006–0.033), as well as on pleasure (Wald χ2 = 25.37–25.73, ps ≤ 0.001) and interest (Wald χ2 = 19.14–21.11, ps = 0.004–0.008) in the first and the middle 10 minutes of the sessions, adjusted for cognitive functioning. Conclusions This study provide evidence that Montessori-based group activities adapted to the local cultural context could effectively engage community-dwelling Chinese older people with mild to moderate dementia in social interactions and meaningful activities and significantly increase their positive affect. Trial registration ClinicalTrials.gov, NCT04352387. Registered 20 April 2020. Retrospectively registered.

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