Aging and Mental Health, 11(2), March 2007, pp.119-130.
Publisher:
Taylor and Francis
Dementia, even at an early stage, may pose problems and challenge one's quality of life. Having accurate knowledge of what one experiences when living with dementia is important for developing proactive care for individuals with dementia and their families. The aim of this Grounded Theory study was to explore what it means for elderly people to live with early-stage dementia. This study...
Dementia, even at an early stage, may pose problems and challenge one's quality of life. Having accurate knowledge of what one experiences when living with dementia is important for developing proactive care for individuals with dementia and their families. The aim of this Grounded Theory study was to explore what it means for elderly people to live with early-stage dementia. This study interviewed 20 elderly people with probable mild dementia and their family members drawn from five memory clinics in Flanders, Belgium. Living with dementia was often presented as a positive narrative, one that told of only minor problems and which stressed abilities and contentment with life. Being valued, rather than losing one's cognition or identity was central in their experience. More in-depth analyses of participants' narratives revealed, however, that they were constantly balancing their feelings of value and worthlessness, struggling to remain someone of value. This struggle was prompted by threats posed by dementia and by the persons' interactions with others. Superficially, a positive narrative may be understood as a lack of awareness or as denial due to cognitive loss. The findings suggest, however, that we should look beyond this superficial view and seek to understand the narrative as an expression of one's attempt to counterbalance devaluation.
Subject terms:
life story work, older people, attitudes, dementia;
Background and Objectives: Meaning in life is an important aspect of positive psychological functioning for older adults. Limited work suggests the relevance of the experience of meaning for people with dementia, but research into this experience from their personal perspective is lacking. The current study provides an in-depth investigation of the lived experience of meaning in life for older...
(Edited publisher abstract)
Background and Objectives: Meaning in life is an important aspect of positive psychological functioning for older adults. Limited work suggests the relevance of the experience of meaning for people with dementia, but research into this experience from their personal perspective is lacking. The current study provides an in-depth investigation of the lived experience of meaning in life for older adults with Alzheimer’s disease. Research Design and Methods: The study was conducted following the phenomenological reflective lifeworld approach. In-depth interviews were conducted with 16 older adults (+65) with Alzheimer’s disease living either at home or in a nursing home in Belgium. Data analysis was an iterative process aimed at illuminating the constituents and essence of the phenomenon. Results: The essence of the experience of meaning in life for participants was understood as “continuing to participate in the dance of life as oneself.” This experience was further clarified in four closely intertwined constituents: (a) feeling connected and involved, (b) continuing everyday life as oneself, (c) calmly surrendering and letting go, and (d) desiring freedom, growth, and invigoration. Discussion and Implications: Our findings contribute to a deeper understanding of meaning in life as experienced by older adults with Alzheimer’s disease themselves. They emphasize the relevance of the concept for psychological dementia research and offer original insight for the inclusion of meaning in life as an important aspect of holistic dementia care.
(Edited publisher abstract)
Subject terms:
dementia, Alzheimers disease, wellbeing, user views, psychology;
International Journal of Geriatric Psychiatry, 35(6), 2020, pp.601-609.
Publisher:
Wiley
Objectives: To evaluate cost‐effectiveness of an in‐home respite care program in addition to standard community‐based dementia care to support informal caregivers of persons with dementia compared with standard community‐based dementia care. Methods: An age‐dependent decision‐analytic Markov model was applied from a third‐party payer and a societal perspective projecting results of a quasi...
(Publisher abstract)
Objectives: To evaluate cost‐effectiveness of an in‐home respite care program in addition to standard community‐based dementia care to support informal caregivers of persons with dementia compared with standard community‐based dementia care. Methods: An age‐dependent decision‐analytic Markov model was applied from a third‐party payer and a societal perspective projecting results of a quasi‐experimental study over a time horizon of 5 years assuming a repetition of the program every 6 months. Additionally, to deal with uncertainty and to test robustness of the model scenario, one‐way and probabilistic sensitivity analyses were conducted. Results: Implementing the program resulted in a quality‐adjusted life year (QALY) gain of 0.14 in favor of the invention group compared with controls and an incremental cost of 1270€ from the third‐party payer perspective and of 1220€ from the societal perspective. Next, an incremental cost‐effectiveness ratio of 9042€/QALY and of 8690€/QALY was found in the base case, from the third‐party payer perspective and the societal perspective, respectively. The scenario, one‐way sensitivity, and probabilistic analyses demonstrated robustness of the base‐case results. Conclusion: This cost‐effectiveness analysis suggests that an in‐home respite care program in addition to standard community‐based dementia care is a cost‐effective approach compared with standard community‐based dementia care only. These findings provide more insight into the value of such services for the patient, the caregiver, and for society.
(Publisher abstract)
Subject terms:
short break care, carers, dementia, cost effectiveness, economic evaluation, informal care, home care;
VAN STEENWINKEL Iris, VAN AUDENHOVE Chantal, HEYLIGHEN Ann
Journal article citation:
Dementia: the International Journal of Social Research and Practice, 18(2), 2019, pp.742-756.
Publisher:
Sage
Due to memory loss, people with dementia are increasingly disorientated in space, time, and identity, which causes profound experiences of insecurity, anxiety, and homesickness. In the case study presented in this article, the authors explored how architecture can support people in coping with this challenge. They took a novel approach to offer architects insights into experiences of living...
(Edited publisher abstract)
Due to memory loss, people with dementia are increasingly disorientated in space, time, and identity, which causes profound experiences of insecurity, anxiety, and homesickness. In the case study presented in this article, the authors explored how architecture can support people in coping with this challenge. They took a novel approach to offer architects insights into experiences of living with dementia. Starting from a critical realist and constructionist approach, they combined ethnographic techniques with an architectural analysis. This case study offers insights into the experiences and activities of a woman living with dementia within the architectural context of her home. The authors describe how the physical and social environment provided her guidance through sequences of day-to-day activities. This study highlights how architecture can support people with dementia in orientating by accommodating places for (1) everyday activities and (2) privacy and togetherness.
(Edited publisher abstract)
Subject terms:
building design, dementia, case studies, housing, memory, coping behaviour, activities of daily living;
Disability and Rehabilitation: Assistive Technology, 11(1), 2016, pp.61-71.
Publisher:
Taylor and Francis
Place of publication:
London
Purpose: This research aimed to integrate three previously developed assistive technology (AT) systems into one modular, multifunctional system, which can support people with dementia and carers throughout the course of dementia. . In an explorative evaluation study, the integrated system, called Rosetta, was tested on usefulness, user-friendliness and impact, in people with dementia
Purpose: This research aimed to integrate three previously developed assistive technology (AT) systems into one modular, multifunctional system, which can support people with dementia and carers throughout the course of dementia. . In an explorative evaluation study, the integrated system, called Rosetta, was tested on usefulness, user-friendliness and impact, in people with dementia, their informal carers and professional carers involved. The Rosetta system was installed in participants‘ homes in three countries: The Netherlands, Germany and Belgium. Methods: Controlled trial with pre- and post-test measures across three countries (randomized controlled trial in Germany; matched groups in the Netherlands and Belgium). Participants completed questionnaires for impact measurement and participated in semi-structured interviews regarding usefulness and user-friendliness of Rosetta. Results: All participants agreed that Rosetta is a very useful development. They did not rate the user-friendliness of the system highly. No significant effects were found on impact measurements. Conclusion: All participants found Rosetta a very useful development for future care, and would consider using it. Since Rosetta was still in development during evaluation, a discrepancy between expectations and actual functioning of Rosetta existed, which may explain the lack of findings on the impact of the system and the low appreciation of user-friendliness.
Subject terms:
assistive technology, dementia, informal care, home care, evaluation, self-help;
International Journal of Geriatric Psychiatry, 23(11), November 2008, pp.1103-1109.
Publisher:
Wiley
This study assessed the sensitivity of the Alzheimer's Disease Related Quality of Life instrument (ADRQL) applied to Belgian people with dementia (n = 357), mild cognitive impairment (MCI) (n = 36), and controls (n = 72). It also aimed to determine the clinical parameters that influence the quality of life (QOL) of people with dementia. Each subject was evaluated with the ADRQL, the Mini Mental...
This study assessed the sensitivity of the Alzheimer's Disease Related Quality of Life instrument (ADRQL) applied to Belgian people with dementia (n = 357), mild cognitive impairment (MCI) (n = 36), and controls (n = 72). It also aimed to determine the clinical parameters that influence the quality of life (QOL) of people with dementia. Each subject was evaluated with the ADRQL, the Mini Mental State Examination (MMSE), the cognitive scale of the Cambridge Examination for Mental Disorders of the Elderly (CAMCOG), the Katz's ADL classification (ADL), the Instrumental Activities of Daily Living (IADL), the Behavior Rating Scale for Dementia (CERAD/BRSD), and the Clinical Dementia Rating/Modified (CDR-M). The ADRQL showed that QOL of the dementia group was significantly inferior to that of the MCI and control groups. There were no significant differences between the MCI and control groups. Within the dementia group, the five ADRQL subscale results were similar to those reported in other studies. Gender, age and place of residence had no significant influence on ADRQL scores. In contrast, ADRQL scores correlated significantly with MMSE, CAMCOG, IADL, ADL, CERAD/BRSD, and CDR-M. The MMSE and CERAD/BRSD were significant predictors of ADRQL variability. QOL of people with dementia is inferior to that of people with MCI and controls. This demonstrates the ADRQL instrument is sufficiently sensitive for evaluating the QOL of people with dementia. Longitudinal studies are needed to specifically examine the rate of QOL evolution throughout the entire dementia process.
Subject terms:
instruments, quality of life, assessment, Alzheimers disease, cognitive impairment, dementia;
ROELANDS Marc, VAN OOST Paulette, DEPOORTER AnneMarie
Journal article citation:
Health and Social Care in the Community, 16(1), January 2008, pp.42-53.
Publisher:
Wiley
This study aims to investigate whether selected social and psychological characteristics of family caregivers of persons with dementia are related to community-based service use in Belgium. Two aspects were distinguished in service utilisation: volume (number of contacts) and diversity (number of services). Within a selected region, dementia caregivers were traced via the detection of persons...
This study aims to investigate whether selected social and psychological characteristics of family caregivers of persons with dementia are related to community-based service use in Belgium. Two aspects were distinguished in service utilisation: volume (number of contacts) and diversity (number of services). Within a selected region, dementia caregivers were traced via the detection of persons with dementia known to community health or social services. A probability diagnosis was made with the Geriatric Mental State and the computer algorithm AGECAT. Family caregivers of persons with dementia (N = 168) were interviewed at home by means of a structured questionnaire. Data were analysed with multiple regression analysis. Co-residence, a positive attitude towards home service use, and increased problem-solving coping were found to be direct predictors of increased diversity of services used, whereas a lower burden of behaviour problems, living apart, and increased avoidance coping were found to be direct predictors of increased volume of service use. Care recipients’ behaviour problems and functional status were not found to be related to service use. The results suggest that social and psychological factors have a larger impact on service use in family caregivers of persons with dementia, compared to objective or subjective burden. Interventions to increase awareness of relevant services, to improve attitudes towards their use and support problem-solving coping in family caregivers may be considered to increase the use of appropriate services.
Subject terms:
home care, service uptake, attitudes, carers, coping behaviour, dementia, families;
International Journal of Geriatric Psychiatry, 20(11), November 2005, pp.1028-1037.
Publisher:
Wiley
Given the rather limited knowledge on profiles of neuropsychiatric symptoms (behavioural and psychological signs and symptoms of dementia, BPSD) in several degenerative dementias, we designed a prospective study of which we here present the baseline data. Diagnosed according to strictly applied clinical diagnostic criteria, 205 patients with probable Alzheimer's disease (AD) , 29...
Given the rather limited knowledge on profiles of neuropsychiatric symptoms (behavioural and psychological signs and symptoms of dementia, BPSD) in several degenerative dementias, we designed a prospective study of which we here present the baseline data. Diagnosed according to strictly applied clinical diagnostic criteria, 205 patients with probable Alzheimer's disease (AD) , 29 with frontotemporal dementia (FTD) , 39 with mixed dementia (MXD) and dementia 23 with Lewy bodies (DLB) were included. All patients underwent a neuropsychological examination and behavioural assessment by means of a battery of scales (Middelheim Frontality Score (MFS), Behave-AD, Cohen-Mansfield Agitation Inventory, Cornell Scale for Depression in Dementia). In AD and MXD, activity disturbances and aggressiveness occurred in more than 80% of the patients. With a prevalence of 70%, apathy was very common whereas delusions and hallucinations were rare in FTD patients. Frequently used behavioural assessment scales like the Behave-AD systematically underestimated BPSD in FTD whereas the MFS displayed high sensitivity for frontal lobe symptoms. Hallucinations discriminated DLB patients from other dementias. A high prevalence of disinhibition (65%) in DLB pointed to frontal lobe involvement. Behavioural assessment may help differentiating between different forms of dementia, further stressing the need for the development of new and more sensitive behavioural assessment scales. By means of the MFS, frontal lobe involvement was frequently observed in DLB. As 70% of FTD patients displayed apathy, prevalence was about two times higher compared to the other disease groups, meanwhile indicating that apathy is frequently observed in dementia, irrespective of its etiology.
This article reports on studies from four continents into age discrimination in the workplace, home care support and mental health issues give valuable pointers for UK practice.
This article reports on studies from four continents into age discrimination in the workplace, home care support and mental health issues give valuable pointers for UK practice.
Subject terms:
home care, older people, quality of life, age discrimination, dementia, employment;
Health and Social Care in the Community, 13(2), March 2005, pp.112-124.
Publisher:
Wiley
Home nurses and home care workers share the care for a person with dementia with family caregivers, and are confronted with their needs for medical and service-related information, for advice on how to cope with the behaviour changes, and for emotional support. The first objective of the present study was to describe some of the conditions for effective counselling, such as the perception...
Home nurses and home care workers share the care for a person with dementia with family caregivers, and are confronted with their needs for medical and service-related information, for advice on how to cope with the behaviour changes, and for emotional support. The first objective of the present study was to describe some of the conditions for effective counselling, such as the perception that knowing the diagnosis has positive consequences for the formal caregivers. A second objective was to describe the formal caregivers' counselling practice, and ascertain its relationship with the psychological variables of attitudes, self-efficacy and subjective norm. A postal questionnaire was sent to 287 home nurses and 1259 home care workers in a defined region of Belgium; the questionnaire was returned by 169 home nurses (58.9% response) and 665 home care workers (52.8% response). The Theory of Planned Behaviour was the organising framework which underpinned the development of the instruments. Only the 168 home nurses and 601 home care workers reporting experience with caregiving to people with dementia were included in the analysis. Formal caregivers indicated that knowing the diagnosis was important, but it could facilitate or hinder caregiving. They were able to describe behavioural characteristics which are indicative of dementia, but only in a limited way, and their strategies to uncover the diagnosis were also limited. Formal caregivers reported that they supported family members emotionally, advised about communication with the person with dementia and informed family caregivers about services. However, providing family caregivers with information about dementia lagged behind these forms of support. In general, nurses scored higher than home care workers. Multiple linear regression analysis was used to investigate the relationships between self-reported practice and the concepts of the model. In both professions, attitudes and self-efficacy were found to be strong independent predictors, and the implications for practice are discussed.
Subject terms:
home care, nurses, carers, counselling, dementia, diagnosis, family relations;