An Investigation of the Wishes, Needs, Opportunities and Challenges of Accessing Meaningful Activities for People Living with Mild to Moderate Dementia

Many people are keen to be actively involved in social life and activities, but even at an early stage, dementia can have a negative impact on social participation and access to leisure activities. As part of the IDoService project, this study has investigated people’s needs and wishes, barriers and facilitators to identify opportunities for improving access to meaningful activities. Individual and focus group interviews were conducted with 5 people living with mild to moderate dementia, 2 familial and 2 professional care partners, as well as 12 people working in the field of dementia and/or community activities. Thematic analysis has highlighted the benefits of participating in meaningful activities, such as empowerment and pride, social contacts, and feeling useful to others. A number of barriers to participation relating to individual and environmental factors were reported. Even where participants praised dementia-friendly activities and facilities, they advocated activities inclusive for all and mentioned that some people might be reluctant to participate in dementia-labelled activities because they may not be suitable for their needs. These results indicate the need for developing tailored opportunities for people with mild to moderate dementia and provide valuable insights for researchers, service providers, policymakers and charities wanting to improve access

Orbitofrontal Dysfunction Related to Both Apathy and Disinhibition in Frontotemporal Dementia

Orbitofrontal metabolic impairment is characteristic of the frontal variant of frontotemporal dementia (fv-FTD), as are early changes in emotional and social conduct. Two main types of behavioral disturbances have been distinguished in fv-FTD patients: apathetic and disinhibited manifestations. In this study, we searched for relationships between brain metabolism and presence of apathetic or disinhibited behavior. Metabolic activity and behavioral data were collected in 41 fv-FTD patients from European PET centers. A conjunction analysis of the PET data showed an expected impairment of metabolic activity in the anterior cingulate, ventromedial and orbital prefrontal cortex, the dorsolateral prefrontal cortex and the left anterior insula in fv-FTD subjects compared to matched controls. A correlation was observed between disinhibition scores on the Neuropsychiatric Inventory scale and a cluster of voxels located in the posterior orbitofrontal cortex (6, 28, –24). Comparison of brain activity between apathetic and nonapathetic fv-FTD patients from two centers also revealed a specific involvement of the posterior orbitofrontal cortex in apathetic subjects (4, 22, –22). The results confirm that the main cerebral metabolic impairment in fv-FTD patients affects areas specializing in emotional evaluation and demonstrate that decreased orbitofrontal activity is related to both disinhibited and apathetic syndromes in fv-FTD.Dieser Beitrag ist mit Zustimmung des Rechteinhabers aufgrund einer (DFG-geförderten) Allianz- bzw. Nationallizenz frei zugänglich

Endocarditis after Use of Tongue Scraper

We explored the neural substrate of anosognosia for cognitive impairment in Alzheimer's disease (AD). Two hundred nine patients with mild to moderate dementia and their caregivers assessed patients' cognitive impairment by answering a structured questionnaire. Subjects rated 13 cognitive domains as not impaired or associated with mild, moderate, severe, or very severe difficulties, and a sum score was calculated. Two measures of anosognosia were derived. A patient's self assessment, unconfounded by objective measurements of cognitive deficits such as dementia severity and episodic memory impairment, provided an estimate of impaired self-evaluative judgment about cognition in AD. Impaired self-evaluation was related to a decrease in brain metabolism measured with 18F-2-fluoro-2-deoxy-D-glucose positron emission tomography (FDG-PET) in orbital prefrontal cortex and in medial temporal structures. In a cognitive model of anosognosia, medial temporal dysfunction might impair a comparison mechanism between current information on cognition and personal knowledge. Hypoactivity in orbitofrontal cortex may not allow AD patients to update the qualitative judgment associated with their impaired cognitive abilities. Caregivers perceived greater cognitive impairments than patients did. The discrepancy score between caregiver's and patient's evaluations, an other measure of anosognosia, was negatively related to metabolic activity located in the temporoparietal junction, consistent with an impairment of self-referential processes and perspective taking in AD

What is needed to obtain informed consent and monitor capacity for a successful study involving people with mild dementia? Our experience in a multi-centre study

This chapter originally appeared as a paper at the International MinD Conference 2019 http://designingfordementia.eu/news/mind-events/mind-conference-2019Strategies on informed consent process and capacity monitoring for mild dementia research are at developing state. We reflected on our experience and found that the successful collection of informed consent and full participation of PwD required the involvement of familiar healthcare professionals/care workers/staff at the recruitment and data collection stages and this needs to occur in an active support environment. Time is another important factor affecting the success of the study

Living Well with Dementia: Feeling Empowered through Interaction with Their Social Environment

This study was designed to advance our understanding of how feelings of empowerment in people living with dementia still residing at home can be promoted. We conducted qualitative interviews with 12 participants with mild-to-moderate stages of dementia in Germany and Spain as part of a European study on mindful design for dementia. A qualitative thematic content analysis was performed to elicit the key features of the experience reported by the interviewees. Three overarching categories were identified: the first category ‘experiencing changes in personal life and coping with changes in life’ covered losses and coping strategies; the second category ‘retaining a sense of usefulness‘ included social participation and the need for activities with others; the third category ‘feeling empowered’ covered reflections on lifetime achievements, accomplishments in the present life, being in control and self-worth. Participants placed a strong emphasis on continuity and on the importance of making active decisions and meaningful social contributions. Empowerment within the person living with dementia was achieved through their interactions with their social environment, including the significance of communication about their needs and wishes and enabling shared decision-making and interactions with others in reciprocity

Assessing the generalisability of a multicentre qualitative dementia research: the experience and challenges faced by the MinD project in Europe

Background: Generalisation of findings is an important aspect of research and essential for evidence-based practice. While generalisation is common in quantitative research, there is a lack of generalisability in qualitative research. This paper presents the experience and challenges faced by the Designing for People with Dementia (MinD) project in meeting the requirements to strengthen the generalisation of findings on the lived experience of people living with dementia and their engagement to co-create designs to empower their everyday living. Methods: Polit and Beck (2010)’s strategies to generalise qualitative findings were applied: (1) replication in sampling; (2) replication of studies; (3) meta-synthesis of findings; (4) reflexivity and conceptualization; (5) immersion with the data; and (6) thick description. Results: While it is possible to increase the generabilisabilty of qualitative evidence through the replication of the sampling to attain a large, heterogeneous sample in different and multiple contexts and environments; implementation of sound and robust research; conducting in-depth analysis and interpretation collaboratively for emergent themes; and meeting the thick description requirement, there are challenges that the project team faced in implementing some of the Polit and Beck’s strategies because of the condition, namely dementia, that our participants are having. Other challenges faced were: the language and cultural diversity in the team; diverse work and organisational procedures; and the inter-disciplinary differences relating to the methods of enquiry, approaches and techniques to conduct research. These challenges will need to be identified and addressed at the start of the project with a strong leadership to ensure a seamless journey to complete the project successfully. Trust between the researchers and participants, and time to build this trust are critical to recruitment and participation in the study; these factors are of utmost important in research involving participants with condition such as dementia

This is me: Evaluation of a boardgame to promote social engagement, wellbeing and agency in people with dementia through mindful life-storytelling

© 2021 The Authors. Published by Elsevier. This is an open access article available under a Creative Commons licence. The published version can be accessed at the following link on the publisher’s website: https://doi.org/10.1016/j.jaging.2021.100995Receiving a dementia diagnosis is a difficult experience for most people and often affects their wellbeing negatively. To support people's wellbeing, in a therapeutic context, life-storytelling, reminiscence and mindfulness are used with people with dementia. In an everyday context, traditional games are used as a resource for stimulating memory, cognition and social activity. While an increasing number of creative strategies are available to support people with dementia, the area of board games design and their effect on wellbeing is underexplored. This paper reports on the evaluation of the This is Me (TIM) mindful life-storytelling board game by the European project MinD. Using a co-design methodology, TIM was developed with and for people with mild to moderate dementia to support their wellbeing by enhancing self-empowerment and social engagement. A focus group methodology was used to evaluate TIM with 50 people with dementia and 19 carers across four countries. TIM was evaluated with regard to the usability and experience of the design as well as people's emotional wellbeing, social engagement and agency. The thematic analysis demonstrated that the combination of life-storytelling and mindfulness allowed players to engage in meaningful social interaction and, as a result, they reported enjoyment, learning, more acceptance of the past and present situation, and that they perceived looking forward into the future together with others as helpful. The study demonstrates that design can be a useful means to support people with dementia in aspects of emotional wellbeing, social engagement and a sense of agency.The ‘MinD - Designing for People with Dementia’ project has received funding from the European Union's Horizon 2020 Research and Innovation Programme under the Marie Skłodowska-Curie grant agreement No 691001.Accepted versio

Age and the Neural Network of Personal Familiarity

BACKGROUND: Accessing information that defines personally familiar context in real-world situations is essential for the social interactions and the independent functioning of an individual. Personal familiarity is associated with the availability of semantic and episodic information as well as the emotional meaningfulness surrounding a stimulus. These features are known to be associated with neural activity in distinct brain regions across different stimulus conditions (e.g., when perceiving faces, voices, places, objects), which may reflect a shared neural basis. Although perceiving context-rich personal familiarity may appear unchanged in aging on the behavioral level, it has not yet been studied whether this can be supported by neuroimaging data. METHODOLOGY/PRINCIPAL FINDINGS: We used functional magnetic resonance imaging to investigate the neural network associated with personal familiarity during the perception of personally familiar faces and places. Twelve young and twelve elderly cognitively healthy subjects participated in the study. Both age groups showed a similar activation pattern underlying personal familiarity, predominantly in anterior cingulate and posterior cingulate cortices, irrespective of the stimulus type. The young subjects, but not the elderly subjects demonstrated an additional anterior cingulate deactivation when perceiving unfamiliar stimuli. CONCLUSIONS/SIGNIFICANCE: Although we found evidence for an age-dependent reduction in frontal cortical deactivation, our data show that there is a stimulus-independent neural network associated with personal familiarity of faces and places, which is less susceptible to aging-related changes

Visual Personal Familiarity in Amnestic Mild Cognitive Impairment

BACKGROUND: Patients with amnestic mild cognitive impairment are at high risk for developing Alzheimer's disease. Besides episodic memory dysfunction they show deficits in accessing contextual knowledge that further specifies a general concept or helps to identify an object or a person. METHODOLOGY/PRINCIPAL FINDINGS: Using functional magnetic resonance imaging, we investigated the neural networks associated with the perception of personal familiar faces and places in patients with amnestic mild cognitive impairment and healthy control subjects. Irrespective of stimulus type, patients compared to control subjects showed lower activity in right prefrontal brain regions when perceiving personally familiar versus unfamiliar faces and places. Both groups did not show different neural activity when perceiving faces or places irrespective of familiarity. CONCLUSIONS/SIGNIFICANCE: Our data highlight changes in a frontal cortical network associated with knowledge-based personal familiarity among patients with amnestic mild cognitive impairment. These changes could contribute to deficits in social cognition and may reduce the patients' ability to transition from basic to complex situations and tasks