Implementation and impact of unforgettable: an interactive art program for people with dementia and their caregivers

2018 ◽  
Vol 31 (3) ◽  
pp. 351-362 ◽  
Author(s):  
Iris Hendriks ◽  
Franka J. M. Meiland ◽  
Debby L. Gerritsen ◽  
Rose-Marie Dröes

ABSTRACTBackground:Previous research shows that museum programs can be beneficial for the quality of life of people with dementia. This study evaluated the implementation of “Unforgettable,” an interactive museum program for people with dementia and their caregivers in the Netherlands, and investigated the impact of the program's implementation on the museums as an organization and on the attitudes toward dementia of the museum staff.Method:Semi-structured interviews were held with 23 stakeholders to identify facilitators and barriers to the implementation of the Unforgettable program in 12 Dutch museums. Based on the model of Meiland et al. (2004), an overview is made of factors influencing the different levels and phases of the implementation process. The impact of Unforgettable on the attitudes of the museum staff was assessed using the Approaches to Dementia Questionnaire (n = 176).Results:The training in the Unforgettable method, regular evaluation with the program guides and hosts, and cooperation with other organizations appeared essential for successful implementation of Unforgettable. A lack of promotional activities was an impeding factor. Compared to before the implementation, the museum employees’ attitudes toward people with dementia became more positive.Conclusion:Both successful dissemination of the Unforgettable program and the more positive attitudes toward dementia of employees in museums implementing this program can contribute to the social participation of people with dementia and thereby to their quality of life.

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 153-154
Author(s):  
Afeez Hazzan

Abstract Dementia is one of the most rapidly growing diseases in the United States. In 2018, the direct costs to American society of caring for older people with dementia was approximately $277 billion. Primary informal caregivers are mainly responsible for the care of older people with dementia including Alzheimer’s disease. Caregivers perform a myriad of duties ranging from shopping for their loved ones’ groceries, helping with medications, and managing finances. The caregiving role becomes more demanding as the disease progresses over time, and studies have shown that the quality-of-life (QoL) experienced by caregivers of older adults who have dementia is lower than the QoL of caregivers for older people who do not have dementia. To the best of our knowledge, there has been no research conducted to investigate whether lower caregiver QoL affects the level or quality of care that caregivers provide to persons with dementia. In the current study, we interviewed family caregivers living in Rochester, New York to inquire about their quality of life and the care provided to older people living with dementia. Further, caregivers completed the 36-item Short Form Health Survey (SF-36) as well as a draft questionnaire for measuring the quality of care provided to older people living with dementia. Both quantitative and qualitative findings from this study reveals important relationships between family caregiver QoL and the care provided, including the impact of social support and financial well-being. The study findings could have significant impact, particularly for the provision of much needed support for family caregivers.


2021 ◽  
pp. 238008442110419
Author(s):  
M. Hijryana ◽  
M. MacDougall ◽  
N. Ariani ◽  
L.S. Kusdhany ◽  
A.W.G. Walls

Introduction: The impact of periodontal disease on oral health–related quality of life (OHRQoL) has often been investigated from a quantitative research perspective, which is based on clinical findings and an OHRQoL questionnaire. Very few studies have examined the issue from the view of qualitative research. To our knowledge, there have been no previous qualitative studies focusing the effect of periodontal disease on OHRQoL in Indonesian older people. Objectives: To explore and understand the impact of periodontal disease on the OHRQoL of older people as a subjective reflection in relation to periodontal disease experiences. Methods: Semi-structured interviews were conducted in a sample of 31 older people with generalized chronic periodontitis. Thematic analysis was used to identify the key issues in participants’ accounts. The analysis was undertaken by 2 independent coders to ensure reliability. To achieve thematic saturation, successive interviews were undertaken until 5 sequential interviews did not bring new themes. Results: Participants reported the negative effects likely related to periodontal disease. The impacts of periodontal disease were described by these older people as affecting more than pain, physical discomfort, and physical function restrictions. Periodontal disease also affected their psychological and social aspects of daily living. In addition, this study identified themes related to individual and environmental factors that may modify and personalize periodontal disease experiences. Furthermore, this study identified a misleading belief that problems related to periodontal disease were a normal part of aging, which might influence individuals’ expectations toward oral health. Relatedly, participants frequently reported that the progression of tooth mobility to tooth loss was an inevitable part of the aging process. Conclusions: Periodontal disease negatively affected participants’ OHRQoL. It is fundamental to understand older people’s perceptions toward their periodontal disease as well as individual and environmental factors that may have an influence on their periodontal disease experiences. Knowledge Transfer Statement: This study is a reflection of Indonesian older people’s subjective periodontal disease experiences. Therefore, the present study can be used to understand older people’s perceptions, attitudes, behaviors, and experiences toward periodontal disease and how this disease may affect their quality of life. This study also highlights a widespread and misleading belief that oral problems related to periodontal disease are an inevitable part of aging in this study population.


2020 ◽  
Vol 16 (1) ◽  
Author(s):  
Amy E. Pergande ◽  
Zoe Belshaw ◽  
Holger A. Volk ◽  
Rowena M. A. Packer

Abstract Background Idiopathic epilepsy is a common neurological condition in dogs. Previous research has focused on clinical aspects of seizure management in dogs with idiopathic epilepsy with little attention given to the emotional and logistical challenges for their owners. The current study aimed to explore the impacts of owning a dog with idiopathic epilepsy on owner quality of life and lifestyle, using qualitative methods. Methods Owners of dogs with idiopathic epilepsy living in England were recruited via social media and word of mouth, and then selected using purposive sampling to participate in face-to-face semi-structured interviews. Epilepsy management was explored through in-depth accounts of owner experiences and influencing factors. Interviews were recorded and transcribed verbatim and thematic analysis was used to construct key themes. Results Twenty-one interviews were completed. Almost all owners had made lifestyle changes in order to care for their dog, including substantial modifications to routines and, in some cases, employment. Many owners discussed a very emotionally close dog-owner bond, and described experiencing frequent feelings of fear, stress and uncertainty regarding their dog’s health. Friends, family and colleagues did not always understand the magnitude of commitment required to care for a dog with idiopathic epilepsy. This, combined with a fear of leaving their dog unsupervised, had social implications in some instances and lead to increased use of the Internet and online groups for peer support. Conclusions The commitment required to care for a dog with idiopathic epilepsy, and the lifestyle changes made by their owners, may be far greater than previously estimated. Further consideration of these factors by veterinary professionals and the friends and families of owners of dogs with idiopathic epilepsy could improve owner quality of life, and facilitate the provision of additional support.


BMJ Open ◽  
2019 ◽  
Vol 9 (3) ◽  
pp. e024376 ◽  
Author(s):  
Andrew Sturrock ◽  
Philip M Preshaw ◽  
Catherine Hayes ◽  
Scott Wilkes

ObjectiveTo explore the impact of medication-related osteonecrosis of the jaw (MRONJ) on quality of life and to explore the attitudes and perceptions of patients towards the multidisciplinary approach to the prevention of the condition.DesignInterpretivist methodology using qualitative semistructured interviews.SettingPrimary care general medical practices and secondary care dental services in England.Participants23 patients; 6 with MRONJ, 13 prescribed bisphosphonates, 4 with osteoporosis not currently prescribed any medication.ResultsPatients felt that MRONJ had a significant negative impact on their quality of life and had poor knowledge of the preventive strategies recommended in the literature. Patients demonstrated positive attitudes towards a multidisciplinary approach to care; however, they perceived prescribers as having the key role in articulating risk. Four salient and inter-related themes emerged from the interviews: (1) perception of knowledge, indicating limited awareness of the condition, risk factors and preventive strategies; (2) quality of life, indicating the lived experiences of patients and the physical, psychological and social impacts of MRONJ; (3) interprofessional management, indicating a perceived organisational hierarchy, professional roles and responsibilities, prioritising aspects of care, articulation of risk and communication and (4) wider context, indicating demands on National Health Service resources and barriers to dental care.ConclusionsMRONJ has a significant detrimental impact on quality of life, yet appropriate preventative education is not apparent. Effective interprofessional patient education and prevention to mitigate against the risk of developing MRONJ is required.


2005 ◽  
Vol 25 (2) ◽  
pp. 197-214 ◽  
Author(s):  
TOWAKO KATSUNO

The purposes of this study were to explore the self-rated and objectively measured quality of life of people with early-stage dementia and to describe their personal experiences and reactions to the negative public view of dementia. Information was collected from 23 participants who lived in a mid-western United States metropolitan area. Self-ratings were collected by semi-structured and structured interviews, and the objective measures were the Quality of Life Index (QLI) and the Single Item Quality of Life Scale (SIQLS). It was found that 21 of the participants perceived their current QOL as ‘good’ or better, and that the mean scores for the QLI and the SIQLS were 22.8 and 7.3 respectively. Triangulation of the subjective and objective data established their congruence. The QLI scores suggested that people with early-stage dementia often perceived their current life as good and that the participants were as satisfied with their life as the general population. Their accounts also revealed that many had experienced stigma and that this appreciably affected their psychosocial wellbeing. The findings of this study provide new insights into the ways in which health-care professionals and the general public can and should view and treat people with dementia.


2013 ◽  
Vol 2013 ◽  
pp. 1-8 ◽  
Author(s):  
Karla Giovana Bavaresco Ulinski ◽  
Mariele Andrade do Nascimento ◽  
Arinilson Moreira Chaves Lima ◽  
Ana Raquel Benetti ◽  
Regina Célia Poli-Frederico ◽  
...  

The aim of this cross-sectional study was to assess the factors associated with the impact of oral health on the quality of life in a sample of 504 Brazilian independent elderly. Data collection included oral examinations and structured interviews. The simplified form of the Oral Health Impact Profile (OHIP-14) was used to measure OHRQoL. Information on sociodemographic characteristics, use of dental services, and subjective measures of health was collected. Poisson regression within a hierarchical model was used to data analyses. The following variables were associated with a negative impact on OHRQoL: female gender (PR = 1.40; CI 95%: 1.11–1.77); lower class (PR = 1.58; CI 95%: 1.13–2.20); up to 3 occluding pairs of posterior teeth (PR = 1.88; CI 95%: 1.13–3.14); at least one untreated caries (PR = 1.28; CI 95%: 1.06–1.54); curative reasons for the last dental appointment (PR = 1.52; CI 95%: 1.15–2.00); poor self-perception of oral health (PR = 2.49; CI 95%: 1.92–3.24); and poor perception of dental care provided (PR = 1.34; CI 95%: 1.12–1.59). The younger elderly also noticed this negative impact. These findings showed that the clinical, sociodemographic, and subjective factors evaluated exerted a negative impact on OHRQoL in elderly people. Health authorities must address all these factors when planning interventions on oral health for this population.


2020 ◽  
Author(s):  
Amy Eliza Pergande ◽  
Zoe Belshaw ◽  
Holger A Volk ◽  
Rowena M A Packer

Abstract Background Idiopathic epilepsy is a common neurological condition in dogs. Previous research has focused on clinical aspects of seizure management in dogs with idiopathic epilepsy with little attention given to the emotional and logistical challenges for their owners. The current study aimed to explore the impacts of owning a dog with idiopathic epilepsy on owner quality of life and lifestyle, using qualitative methods. Methods Owners of dogs with idiopathic epilepsy living in England were recruited via social media and word of mouth, and then selected using purposive sampling to participate in face-to-face semi-structured interviews. Epilepsy management was explored through in-depth accounts of owner experiences and influencing factors. Interviews were recorded and transcribed verbatim and thematic analysis was used to construct key themes. Results Twenty-one interviews were completed. Almost all owners had made lifestyle changes in order to care for their dog, including substantial modifications to routines and, in some cases, employment. Many owners discussed a very emotionally close dog-owner bond, and described experiencing frequent feelings of fear, stress and uncertainty regarding their dog’s health. Friends, family and colleagues did not always understand the magnitude of commitment required to care for a dog with idiopathic epilepsy. This, combined with a fear of leaving their dog unsupervised, had social implications in some instances and lead to increased use of the Internet and online groups for peer support. Conclusions The commitment required to care for a dog with idiopathic epilepsy, and the lifestyle changes made by their owners, may be far greater than previously estimated. Further consideration of these factors by veterinary professionals and the friends and families of owners of dogs with idiopathic epilepsy could improve owner quality of life, and facilitate the provision of additional support.


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