Autonomy In Daily Life Research Articles

Technology-enhanced multi-domain at home continuum of care program with respect to usual care for people with cognitive impairment: the Ability-TelerehABILITation study protocol for a randomized controlled trial.

BackgroundAccording to the World Alzheimer Report (Prince, The Global Impact of Dementia: an Analysis of Prevalence, Incidence, Cost and Trends, 2015), 46.8 million people worldwide are nowadays living with dementia. And this number is estimated to approximate 131.5 million by 2050, with an increasing burden on society and families. The lack of medical treatments able to stop or slow down the course of the disease has moved the focus of interest toward the nonpharmacological approach and psychosocial therapies for people with/at risk of dementia, as in the Mild Cognitive Impairment (MCI) condition. The purpose of the present study is to test an individualized home-based multidimensional program aimed at enhancing the continuum of care for MCI and outpatients with dementia in early stage using technology.MethodsThe proposed study is a single blind randomized controlled trial (RCT) involving 30 subjects with MCI and Alzheimer’s disease (AD) randomly assigned to the intervention group (Ability group), who will receive the “Ability Program”, or to the active control group (ACG), who will receive “Treatment As Usual” (TAU). The protocol provides for three steps of assessment: at the baseline (T_0), after treatment, (T_1) and at follow-up (T_2) with a multidimensional evaluation battery including cognitive functioning, behavioral, functional, and quality of life measures. The Ability Program lasts 6 weeks, comprises tablet-delivered cognitive (5 days/week) and physical activities (7 days/week) combined with a set of devices for the measurement and monitoring from remote of vital and physical health parameters. The TAU equally lasts 6 weeks and includes paper and pencil cognitive activities (5 days/week), with clinician’s prescription to perform physical exercise every day and to monitor selected vital parameters.DiscussionResults of this study will inform on the efficacy of a technology-enhanced home care service to preserve cognitive and motor levels of functioning in MCI and AD, in order to slow down their loss of autonomy in daily life. The expected outcome is to ensure the continuity of care from clinical practice to the patient’s home, enabling also cost effectiveness and the empowerment of patient and caregiver in the care process, positively impacting on their quality of life.Trial registrationClinicalTrials.gov ID: NCT02746484 (registration date: 12/apr/2016 – retrospectively registered).

Aids for Patients with Glaucoma and Visual Impairment

This article provides a broad overview of the existing medical aids and appliances for patients suffering from glaucoma and/or visual impairment. Furthermore, instructions for proper handling of eye drop therapy are given. There are many different public services to support patients with visual impairment and that aim to restore their mobility and autonomy in daily life. About 20,000 medical aids and tools are currently listed as refundable by insurances. The available supply ranges from magnifying reading aids to electronic aids and appliances to train patients' orientation, mobility and skills of every day life. Qualified professionals may be employed by organisations such as the DBSV e. V.and can accompany, support and counsel patients and their families with their specialised knowledge.

Non-pharmacological intervention for posterior cortical atrophy.

Posterior cortical atrophy (PCA) is a rare neurodegenerative condition characterized by progressive visual-perceptual deficits. Although the neurocognitive profile of PCA is a growing and relatively well-established field, non-pharmacological care remains understudied and to be widely established in clinical practice. In the present work we review the available literature on non-pharmacological approaches for PCA, such as cognitive rehabilitation including individual cognitive exercises and compensatory techniques to improve autonomy in daily life, and psycho-education aiming to inform people with PCA about the nature of their visual deficits and limits of cognitive rehabilitation. The reviewed studies represented a total of 7 patients. There is a scarcity of the number of studies, and mostly consisting of case studies. Results suggest non-pharmacological intervention to be a potentially beneficial approach for the partial compensation of deficits, improvement of daily functionality and improvement of quality of life. Clinical implications and future directions are also highlighted for the advancement of the field, in order to clarify the possible role of non-pharmacological interventions, and its extent, in PCA.

The German AugUR study: study protocol of a prospective study to investigate chronic diseases in the elderly.

BackgroundThe majority of patients suffering from chronic health disabilities is beyond 70 years of age. Typical late-onset chronic diseases include those affecting the heart, the kidney, cancer, and conditions of the eye such as age-related macular degeneration. These diseases disable patients for many years and largely compromise autonomy in daily life. Due to challenges in recruiting the elderly, the collection of population-based epidemiological data as a prerequisite to understand associated risk factors and mechanisms is commonly done in the general population within an age-range of 20 to 70 years.Methods/DesignWe establish the German AugUR study (Age-related diseases: understanding genetic and non-genetic influences - a study at the University of Regensburg), a prospective study in the mobile elderly general population in and around Regensburg in eastern Bavaria. In the long term, we aim to recruit 3,000 persons of Caucasian ethnicity with at least 70 years of age via residents’ registration offices and conduct 3-year follow-ups.The study protocol includes a standardized interview regarding social and life-style factors, medication history, quality-of-life, and existing diagnoses of common diseases. The participants undergo medical examinations for ophthalmological, cardiovascular or diabetes-related conditions, and general measurements of body shape and fitness. The program is particularly tailored for the elderly. Biobanking of whole blood, serum, plasma, and urine is conducted and standard laboratory measurements are performed in fresh samples.DiscussionAugUR is specifically designed as a research platform to host studies of late onset diseases. Consequently, this platform will help (1) to unravel the genetic and non-genetic etiology of disease development and progression, (2) to serve as control group of elderly individuals for comparisons with various patient groups, (3) to derive prevalence and incidence data on chronic diseases, and (4) to provide clinical reference parameters for the elderly mobile general population. This data will foster our understanding of disease mechanisms, which may ultimately help to improve prevention, diagnosis, and therapy for frequent chronic diseases. Here we present the baseline study protocol of AugUR.

Physically Disabled Adults’ Perceptions of Personal Autonomy

Despite the prominence of the concept of autonomy in the UN Convention on the Rights of Persons With Disabilities and within disability theory, the relevance of autonomy to occupational engagement is unclear. Using a qualitative, narrative approach, eight adults with significant physical disabilities engaged in iterative interviews exploring their life history and perception of autonomy in daily life. Interviews were transcribed verbatim and themed. Key themes that emerged were that participants valued autonomy differently; their perception of their own personal autonomy influenced both occupational choices and the meaning derived from occupational engagement. While some participants actively sought occupations in which they could make decisions, others preferred more supportive environments, yet all participants avoided situations in which their autonomy was undermined. Awareness of an individual's values regarding autonomy could assist occupational therapists to both select appropriate occupations for intervention and discuss the meaning derived from occupations, thereby enhancing client-centered practice.

Assessment of Topographical Disorientation: First Application of New Tests and Case Report

A right posterior cerebral lesion can lead to an inability to orient and can consequently interfere with daily-life autonomy. Despite the wide literature about navigation abilities, it is still difficult to assess topographical disorientation (TD) because of the interindividual specificity of spatial knowledge and the diversity of symptoms. We describe here a set of new tests evaluating spatial cognition in a patient with TD presenting difficulties in navigating inside the hospital and in his hometown more than 3 years after his diffuse ischemic right Sylvian stroke. These tests assess mental imagery (global and specifically spatial imagery), perspective change, and the ability to recall spatial relations in familiar environments. The evaluation revealed difficulties with all the tests (but not in global mental imagery) in this patient when compared with matched controls. Hence, these new tests seem specific and affected by a right hemispheric lesion. The observed deficits can explain, at least partially, the spatial orientation difficulties experienced by this patient in the hospital and familiar environments. In conclusion, these tests could be appropriate tools for the assessment of visuospatial and spatial processes.

Values Important to Terminally Ill African American Older Adults in Receiving Hospice Care

While racial disparity in the use of hospice care by older African Americans is widely acknowledged, little is known about the values that they consider as important in receiving health care services along with direct experiences with having these values respected by hospice care providers. Using individual, face-to-face interviews, data were collected directly from 28 African American hospice patients about their experiences in hospice care. Content analysis was used to identify and categorize themes from multiple readings of the qualitative data. Resulting themes included: dying at home, open communications, independent decision-making, autonomy in daily life, unwillingness to be a burden, and relationships. Through the initial assessment, value preferences can be explored and then shared with hospice team members to ensure that services are provided in such a way that their values and preferences are respected.

Potenzialanalyse zu logopädischem Kommunikationstraining bei Aphasie nach Schlaganfall

In Germany, about 100,000 people currently suffer from aphasia. This speech disorder occurs as a result of neurologic events such as stroke or traumatic brain injury. Aphasia causes major limitations in social participation and quality of life and can be associated with unemployability and social isolation. For affected persons, it is essential to regain and maintain autonomy in daily life, both at work and with family and friends. The loss of autonomy is perceived much more dramatically than the loss of speech. Clients wish to minimise this loss of autonomy in daily life. As full recovery is not achievable in chronic aphasia, treatment must focus on improved compensatory approaches and on supporting the clients' coping strategies. Based on eight randomised comparisons including 347 participants, a recent Cochrane review (Brady et al., 2012) revealed that speech therapy - as compared with no treatment - had positive effects on functional communication in clients suffering from aphasia (0.30 SMD; 95% CI[0.08 to 0.52]). There was no evidence suggesting that one type of training was superior to the others. However, quality of life and social participation were not evaluated as outcomes. Recent studies found that speech therapy-led training for communication and self-efficacy and the integration of communication partners may have a positive impact on these client-centred outcomes. Speech therapy-led training for communication within a group setting should be manualised and pilot-tested with respect to feasibility and acceptance in a German sample of people with aphasia and their communication partners. Instruments measuring quality of life and social participation can be validated within the scope of this feasibility study. These research efforts are necessary to prepare a large-scale comparative effectiveness research trial comparing the effects of both usual speech therapy and speech therapy-led group communication training on quality of life and social participation.

Main interventions for rehabilitation of autobiographical memory in Alzheimer's disease from early to severe stage: a review and new perspectives

Given the limitations of pharmacological treatments in Alzheimer's disease, many non-drug therapies have emerged in recent decades and are often offered in complement of pharmacological treatments. The cognitive rehabilitation interventions focused on memory are usual in Alzheimer's disease. Memory deficits are prominent from the early stages of the disease and cause detriment to patient autonomy in daily life. In particular, problems of identity and autobiographical memory, although still often overlooked in the patients' general neuropsychological profile, appear right away. Because of their more insidious negative influence, specific treatments are still underdeveloped. Rehabilitation of autobiographical memory is complex because it requires taking into account its multiple components, both semantic and episodic, but also understanding its links with personal identity. Thus, this article provides an overview of existing cognitive rehabilitation interventions of anterograde and retrograde autobiographical memory in Alzheimer's disease. We specify the contribution of new technologies to improve the consolidation of recent events memory and of a rehabilitation program of autobiographical memory - REMau -, derived from the TEMPau task, which takes into account the constructive nature of episodic memories via the personal semantic through different periods of life. The main aim is to examine what are the objectives, benefits and limitations of these interventions and to estimate how they can meet the more general problem of deficiency in personal identity. As identity is constructed on the basis of past experience, but is modulated by new experiences, our current challenge is to associate combined treatments of anterograde and retrograde memory based on the interaction between autobiographical memory and the self.

Physical medicine and rehabilitation multidisciplinary approach in a case of posterior cortical atrophy

Posterior cortical atrophy (PCA) is a degenerative syndrome heralded by progressive visual and spatial disorders, while the memory and execution capacities remain preserved for a long time. We report the clinical case of a female patient who received a global Physical and Rehabilitation Medicine (PRM) therapy. Our objective is to highlight the interest of a multidisciplinary approach in PCA. A female patient, LO, 60 years old, presented with visual and spatial difficulties of progressive worsening, while global cognitive efficiency was preserved, signing PCA, with a loss of autonomy in daily life. A six-month multidisciplinary approach (speech therapy, occupational therapy, and physiotherapy) centered on her visual disturbances and associated to the reinforcement of her preserved abilities, as well as a rehabilitation program, was proposed. At the end of this period, LO was again able to read, find efficient exploratory strategies, use the underground, visit museums, have leisure activities, and carry out everyday life activities, which she had ended up abandoning. The specific therapeutic management allowed reaching functional objectives. Our hypothesis is that the absence of other cognitive disorders allowed this type of rehabilitation "contract". The neurodegenerative pathologies responsible for specific instrumental disabilities without global cognitive alteration, and particularly PCA, should be able to benefit from a specific, or even multidisciplinary PMR therapy approach.

Physical functioning: The mediating effect on ADLs and vitality in elderly living in residential care facilities. “Act on ageing”: A pilot study

The present study aims at verifying whether participation in a physical activity programme has positive effects on the daily life autonomy and vitality of elderly people living in residential care facilities by the mediation of their physical well- being. Fifty-one institutionalised individuals took part in the study. The control group included 11 people (84.26, ± 7.4 years), whereas the experimental group was made up of 40 people (85 ± 6.6 years). The experimental group was involved in a physical activity programme twice a week. The 36-Item Short Form Health Survey Questionnaire, the Activities of Daily Living Scale, and the Tinetti Test were administered to the participants. The linear regression method as well as Sobel’s formula were used for the analysis. The results show that participation in a physical activity programme has positive effects on autonomy in bathing and on the participants’ sense of vitality due to the mediation of physical functioning. These results confirm the importance of physical activity for the elderly populations living in residential care facilities.

Small-scale, homelike facilities in dementia care: A process evaluation into the experiences of family caregivers and nursing staff

Background Current developments in institutional dementia care aim at the downsizing of facilities and increasing their homelike appearance. Small-scale living facilities are an example of this movement, in which a small group of residents (usually six to eight) live together in a homelike environment. Residents are encouraged to participate in normal daily activities and nursing staff is part of the household with integrated tasks. Despite the increase of these facilities, little is known about experiences of family caregivers of residents and nursing staff. Objective To gain an in-depth insight into the experiences of family caregivers and nursing staff with small-scale living facilities. Design A process evaluation was conducted alongside the final measurement of an effectiveness study, using a cross-sectional, descriptive design. Settings Two types of institutional dementia care in the Netherlands: small-scale living facilities and regular wards in nursing homes. Participants In total, 130 family caregivers and 309 nursing staff workers in both care settings participated in a survey questionnaire. Additional in-depth interviews were conducted with a random selection of 24 participants in small-scale living facilities: 13 family caregivers and 11 nursing staff workers. Methods Survey questions for family caregivers focused on care service delivery; questions for nursing staff were related to skills. The interviews especially related to positive and negative aspects of small-scale living facilities and skills for nursing staff. Results Both family caregivers and staff mainly reported positive experiences with small-scale living facilities, especially the personal attention that nursing staff provides to residents, their involvement with residents and the emphasis on autonomy in daily life. Barriers mainly related to nursing staff working alone during a large part of the day. Family caregivers in small-scale living facilities were more satisfied with the care facility and nursing staff than those in regular wards. Conclusion The findings of the study revealed several positive aspects of small-scale living facilities related to physical, social and organizational aspects that could be used as tools to implement changes in institutional dementia care settings.

Qualité de vie des déficients visuels adultes après prise en charge en consultation basse vision : une étude pilote

To demonstrate the benefits of a low-vision intervention upon the quality of life of visually disabled adults. The survey was proposed to patients who sought a low-vision intervention at the Colmar and Strasbourg hospital centres over a period of 9 months. Patients in agreement with the survey were asked to complete the 25-item National Eye Institute Visual Function Questionnaire (NEI VFQ25) in interview format by telephone, once they had attended the first meeting and again 2 months after the end of the low-vision intervention. The low-vision intervention led to overall improvement as judged by the 25 items of the questionnaire. Some items involving visual function and psychological issues showed significant benefits: the patients reported a more optimistic score concerning their general vision, described better nearby activities, and felt a bit more autonomous. More than mainstream psychological counselling, low-vision services help patients cope with visual disabilities during their daily life. The low-vision intervention improves physical and technical issues necessary to retaining autonomy in daily life.

Performance of activities in daily living in children born with spina bifida

PERFORMANCE OF ACTIVITIES IN DAILY LIVING IN CHILDREN BORN WITH SPINA BIFIDA Background Dependency in daily living in children with spina bifida has most commonly been described as a problem due to motor dysfunctions and little is known about the impact on the performance of daily living activities due to executive dysfunction. The aim of this study was to evaluate the quality of the performance of daily activities in children with spina bifida. This study is the first in larger research plan aimed to study the correlation between skills of activity performance and perceived participation in school and everyday life among children born with spina bifida. Materials and Methods A cross-sectional study of children from the western region of Sweden with spina bifida (n=50) born between1993-1999, was carried out at the Regional Rehabilitation Centre for children and adolescents in Gothenburg to evaluate performance of activities in daily living using the Assessment of Motor and Process Skills (AMPS). The study group consisted of both children with and without hydrocephalus. The AMPS is an observational method designed to allow a simultaneous evaluation of the motor and process skills necessary for a competent performance. The results from the study group were analysed and compared to age-matched normative values and to match-pairs of typically developed Scandinavian children, in the latter case considering minimal clinical important differences (> 0,5 logits). Results The results showed that 60% of the children with spina bifida had lower ADL-motor skills and 48% had lower ADL-process skills than the age norms (± 2SD). Results from the match-pair comparisons shows that the study group had skill values that were lower and of clinical meaningful importance on motor skills in 80% of the cases and on process skills in 66% of the cases. There were significant differences in both motor skills and process skills in the study group between the children with and those without hydrocephalus with the former group demonstrating lower measures. Conclusions Children with spina bifida have, to a large extent, decreased ability to perform activities of daily living relating to impairment of both motor and process abilities. These findings suggests that to reach autonomy in daily life, children born with spina bifida need support from parents and professionals to find, to learn and to use strategies not only to know “how to do things” but also “how to get things done”

Autonomy among physically frail older people in nursing home settings: a study protocol for an intervention study.

BackgroundExperiencing autonomy is recognised to promote health and well-being for all age groups. Perceived lack of control has been found to be detrimental to physical and mental health. There is a lack of evidence-based knowledge elucidating how frail older people in nursing home settings themselves perceive autonomy in daily life. Further, there are no studies on the extent to which this perception can be influenced positively by participating in an individually tailored programme based on residents' own wishes for daily activities.Methods and designA total of 9 nursing homes and 55 participants aged 65 years or older were included in the study. All the participants were restricted in performing at least one P-ADL activity unassisted and had a Mini Mental State Examination-score above 16. Perceived autonomy was measured at baseline, after 12 weeks and after 24 weeks by The Autonomy Sub-dimension in the Measure of Actualisation of Potential test. Programmes were based on participants' individual assessment of their most important daily activities. Staff at all nursing homes who usually organize physical training, social or creative activities carried out individually tailored programmes using their usual methods and equipment. Participants in each nursing home were divided by lot into either a control group or an intervention group. The control groups received their usual care and treatment.DiscussionThis study is designed to assess the status of perceived autonomy at baseline and to provide information about the effectiveness of individually tailored programmes according to perceptions of autonomy registered in institutionalised physically frail older people. This will add knowledge to assist response to present and future challenges in relation to health promotion initiatives for this group.Trial registration numberNCT00783055

Usefulness and Limitations of Evaluation Scales in the Care of Elderly People

Evaluation scales are used in the care of elderly people. They are useful for estimating the workload, the necessary resources, the care cost, the patient’s dependency or autonomy in daily life, and/or the patient’s needs. The large number of grids already indicates their insufficiency. This article explores the stakes implied by the evaluations, which use concepts more or less clearly defined as autonomy, dependency, deficiency, incapacity. It also questions our understanding of interdependence, vulnerability, and responsibility, and their implications in the care relations with elderly people.

Randomised controlled trial of a behavioural family intervention: 1 year and 11-years follow-up

To test the efficacy of a Behavioural Family Therapy (BFT) in a routine setting, both short and long term, of a community mental health service (CMHS). In a randomised clinical trial 24 patients with a diagnosis of schizophrenia, as confirmed by PSE-IX, were assigned to the BFT according to Falloon (n = 12) or to individual usual treatment (n = 12). They were assessed before and at the end of the active treatment (after one year), and after an 11-years follow-up with compared on basic indicators (hospitalisations, length of stay, drop-out rate) and standardised instruments of psychopathological symptoms, social functioning, family burden. At one-year follow-up clinical important and statistically significant differences were observed for psychotic positive symptoms (p<0.01), self-care (p<0.01), autonomy in daily life (p<0.001), subjective/objective family burden (p<0.001). Other psychosocial variables showed positive outcomes non reaching statistical significance. At the 11-year follow-up, marked differences were observed only in hospitalisations and drop-outs. The BFT was rather easy to implement in a CMHS and very cost effective. However, as it has been shown in other studies, to keep all the benefits a consistent program of monitoring with booster sessions is essential.

Determinants of quality of life of bladder cancer survivors five years after treatment in France.

The aim of the population-based study presented here was to evaluate quality of life (QOL) among bladder cancer survivors at least five years after diagnosis, ascertain the long term effects of treatments, and investigate important pathological and sociodemographic factors influencing the QOL of such survivors. A Functional Assessment of Cancer Therapy (FACT) questionnaire with a bladder-specific option (FACT-Bl), was sent by mail to patients randomly selected from the database of the Isère and Tarn cancer registries in France. Ninety-five valid completed questionnaires were returned by 78 males and 17 females, with a median age of 72 years (range, 33-90). The pathological information contained in the completed questionnaires was examined. Of the 95 patients (76 with a superficial tumor, 17 with an invasive tumor), 20 had undergone total cystectomy. Total cystectomy clearly deteriorates the autonomy of survivors (ECOG-PSR), as well as their scores on the bladder cancer-specific sub-scale in sexuality-related questions. Survivors claimed impotency and loss of sexual interest after the cystectomy. In contrast, neither the type of treatment nor the time from the most recent major treatment were score-modifying factors. Negative psychological effects of treatments in the long-term were not observed. Rather, patients' QOL was affected by their autonomy in daily life and by old age. In addition, familial situation had a critical impact on emotional and Familial/Social Well-being. The present study showed the long-term negative effect of total cystectomy on survivors. Survivor autonomy and other sociodemographic backgrounds were also determinants of their QOL. The maintenance of good health, sexual function and active family relationships should be promoted so that patients can lead full lives after treatment.

Attitudes toward community-based services among Japanese American families.

This descriptive study explored attitudes toward community-based long-term care services and factors influencing service utilization among Japanese American families. Using grounded theory methodology, the Japanese American sample included 26 family caregivers, 4 persons receiving care, and 14 professional providers (n = 44). Attitudes toward services were identified along six dimensions: ability to meet care needs, autonomy in daily life, quality of care and staff, cost, emotional connotations, and social and physical environment. Participants used formal services in a dynamic manner, meeting both episodic and chronic needs. Families played an active role in sustaining and augmenting the caregiving situation, regardless of living arrangement. This research highlights the range of criteria included in attitude formation about services and the dynamic nature of the interplay between families and formal services.

Dependency as disadvantage – patients' experiences

Dependency as disadvantage - patients' experiences This is an empirical qualitative study of the dependent community patient. The investigation raises the question of what it is like to be a highly dependent patient and how they relate to the situation. A non-probability, volunteer sample was selected from home nursing patients in a large town in Norway. The data were collected through in-depth interviews with 15 patients in their home using a semistructured interview guide. A constant comparative approach was used for analysing data. The results show that dependency has disadvantages like constraints and burdens in daily life. The patient adjusts both in a reactive and proactive way. The constraints are apparent through reduced autonomy in daily life and limited possibilities for negotiation. The burden is demonstrated through uncertainty within the encounter situation, low esteem, and loss of privacy. Adjustment is made through planning, guidance of the carer, acceptance of the situation, positive self-image and by protection of family and carer, and placing blame on the bureaucracy. The patient reacts in a more passive, reactive way regarding circumstances connected to the health care system and in a more proactive way by trying to influence the situation in the interaction in the private sphere of the patient's home.