Alzheimer Europe talk 2015 Dr Shibley Rahmanshibley
These are the slides for the presentation I will give this year at the Alzheimer Europe conference in Ljubljana in Slovenia. It's survey based research on the importance of clinical nursing specialists in dementia.
What offers more choice? Budgets or human rights?shibley
My talk on how best to deliver choice in English dementia strategy - through the market, e.g. personal budgets, or international law, e.g. human rights.
Dr Shibley Rahman book launch February 2017shibley
This document provides information about an event to discuss integrated care for dementia and the launch of a new book on the topic. The event will feature several speakers discussing different aspects of dementia care from various perspectives, including clinical psychology, technology, acute hospitals, care homes, and hospices. It will include a panel discussion on making person-centered integrated care a reality and the benefits of involving those with dementia and their caregivers in services and research. The event aims to stimulate discussion on providing the best possible health, wellbeing, and care for those living with dementia through a holistic and collaborative approach.
This document discusses supporting patients with learning disabilities at end of life. It notes that people with learning disabilities now have longer lifespans but often have multiple health issues. They face barriers to receiving proper end of life care, such as not having illnesses recognized or treated in a timely manner. Effective communication is key to providing good end of life care for those with learning disabilities. Advance care planning and using accessible information and reasonable adjustments can help facilitate holistic care that respects the individual.
Alzheimer Europe talk 2015 Dr Shibley Rahmanshibley
These are the slides for the presentation I will give this year at the Alzheimer Europe conference in Ljubljana in Slovenia. It's survey based research on the importance of clinical nursing specialists in dementia.
What offers more choice? Budgets or human rights?shibley
My talk on how best to deliver choice in English dementia strategy - through the market, e.g. personal budgets, or international law, e.g. human rights.
Dr Shibley Rahman book launch February 2017shibley
This document provides information about an event to discuss integrated care for dementia and the launch of a new book on the topic. The event will feature several speakers discussing different aspects of dementia care from various perspectives, including clinical psychology, technology, acute hospitals, care homes, and hospices. It will include a panel discussion on making person-centered integrated care a reality and the benefits of involving those with dementia and their caregivers in services and research. The event aims to stimulate discussion on providing the best possible health, wellbeing, and care for those living with dementia through a holistic and collaborative approach.
This document discusses supporting patients with learning disabilities at end of life. It notes that people with learning disabilities now have longer lifespans but often have multiple health issues. They face barriers to receiving proper end of life care, such as not having illnesses recognized or treated in a timely manner. Effective communication is key to providing good end of life care for those with learning disabilities. Advance care planning and using accessible information and reasonable adjustments can help facilitate holistic care that respects the individual.
This document discusses the need for choice and patient-centered care in children's palliative care. It notes that there are approximately 49,000 children in the UK with life-limiting conditions, yet their voices are often not heard and patient choice is absent. Parents describe the system as a "minefield" with a lack of support and coordination. Short breaks for respite care are important but often not funded by local authorities. Choice is limited by a lack of services due to underfunding. The document calls for improved coordination, a national inquiry, mandated joint commissioning, and greater transparency and accountability in funding to better meet the needs of children requiring palliative care and their families.
Kath Sutherland presented on providing effective person-centered support for those at the end of life. She discussed how removing barriers through responsive, coordinated services based on co-production principles can support individuals' needs, wishes and circumstances. This requires considering individuals holistically, utilizing local resources, addressing impacts on health/social care, and investing in proven support methods, research, training and implementation support.
Steve Laitner on integrated care - innovations in the UKThe King's Fund
Dr Steve Laitner, GP and Associate Medical Director of NHS East of England, discusses integrated care innovations in the UK with a focus on pathway hubs.
Chris Ham on making integrated care happen at scale and paceThe King's Fund
Chris Ham, Chief Executive at The King’s Fund, highlights the 16 lessons needed to make a reality of integrated care, drawing on work by the Fund and others to provide examples of good practice.
The document discusses supporting staff who work in stressful healthcare environments. It describes how the Point of Care Foundation works at various levels to help staff flourish, such as by raising awareness of effective support methods and providing training. Schwartz Rounds are discussed as one approach to addressing challenges staff face by allowing them to share difficult experiences in a supportive setting. Research shows links between staff wellbeing, engagement, and positive patient experiences. The framework proposes primary, secondary, and tertiary interventions for supporting staff wellbeing at the individual, team, and organizational levels to help prevent and address stress.
This document discusses personal health budgets in the UK NHS. It provides background on personal health budgets, which allow patients more choice and control over how their health needs are met. The document outlines several pilots of personal health budgets, including one focused on delivering them in end-of-life care. It shares early experiences from different pilot sites, finding that personal health budgets improved outcomes and choices for patients while often costing less than traditional care packages. The document provides resources for learning more about personal health budgets and their implementation in the NHS.
Denise Heals presents on her role developing end of life care practices for people with learning disabilities. She outlines approaches used like working with managers and staff in one-off sessions or over 12 months using person-centered thinking tools. Examples of developments include end of life care plans, memorials for residents, and cultural changes at hospices like link nurses and accessible resources. The impact has been greater understanding of end of life care, more open discussions, and improved policies.
The document provides an overview of the Irish Hospice Foundation's Changing Minds project which aims to improve end-of-life care for people with dementia through three key outcomes: prioritizing palliative care, improving end-of-life care in residential settings, and increasing public awareness and advance care planning. The project involves developing resources for staff, families, and people with dementia, providing education and training, and supporting service development initiatives including grants and improving support for home deaths. The goal is to enhance care quality and dignity at the end of life for people with dementia.
Judith Smith and Chris Ham: Commissioning integrated care - what role for cli...The King's Fund
Dr Judith Smith, Head of Policy at the Nuffield Trust, and Professor Chris Ham, Chief Executive of The King’s Fund, share the findings of their recent research into how NHS commissioners have been commissioning better integrated services and care for people in local areas.
Deirdre Shanagher and Sarah Cronin presented at an MS Ireland Information Day on challenges of end of life care for progressive neurological patients. They discussed the Irish Hospice Foundation's vision of ensuring all receive end of life support and care. Group work identified needs of neurological patients like long illnesses, recognizing end stages, and complex care. Issues in care discussions included sensitivity, access to palliative services, and timing conversations. Identifying and responding to care needs means providing information, support, and awareness to prompt conversations.
This document summarizes a presentation about end of life care for people with dementia. It discusses what people with dementia say about end of life care, including challenges around communication and acknowledging loss. It also examines the palliative care needs of people with dementia, noting issues around symptoms, care transitions and multidisciplinary support. Further, it outlines how incorporating a palliative approach into routine dementia care can help with advance care planning, loss and grief, and staff education. Finally, it analyzes how supporting people with dementia to die at home requires individualized care, future planning, symptom management and access to family and community support services.
This document summarizes a meeting of the Hertfordshire and West Essex Sustainability and Transformation Partnership about population health management. The meeting included presentations on the national context of population health and PHM, developing PHM locally, and next steps. It discussed the role of elected members in improving health outcomes and wellbeing for residents. Attendees considered developing a population health strategy and wider determinants of health. The goal is to improve physical and mental health across the population through data-driven care that addresses health inequalities.
This document discusses supporting people with dementia to die at home in Ireland. It identifies key factors that enable home death, including availability of family/friend care, decision making between the person and family, and access to GP and homecare supports. While home death remains rare for those with dementia, the document recommends increased palliative care, support for home care, and nationally recognized tools to plan for end of life care needs.
This document summarizes the author's work partnering palliative care and learning disability services. It describes establishing partnerships between local commissioners to address the needs of people with learning disabilities receiving end-of-life care. This included conducting a needs assessment, launching a training program for both services, holding educational events, and establishing resources. The author also presented their model of partnership to other London boroughs, who then set up their own end-of-life care working groups based on the success of the program.
Dementia friendly communities - my talk this eveningshibley
This is the talk I gave on dementia friendly communities this evening at BPP Law School. It is part of a public lecture series for raising awareness about English dementia policy for the general public. The lectures are provided completely free of charge.
Co-production, co-design and co-construction of dementia policyshibley
This document discusses co-production, co-design, and co-construction of dementia policy. It notes that 47 million people worldwide live with dementia, including around 850,000 people in the UK. It emphasizes that health and social care services should make use of the insights and skills of those using the services, and that genuine collaboration is needed between those with lived experience of dementia and professional expertise. The document explores different approaches to co-production, co-design, and how greater involvement of those with dementia and their unpaid carers is important for more effective policy.
This document discusses the need for choice and patient-centered care in children's palliative care. It notes that there are approximately 49,000 children in the UK with life-limiting conditions, yet their voices are often not heard and patient choice is absent. Parents describe the system as a "minefield" with a lack of support and coordination. Short breaks for respite care are important but often not funded by local authorities. Choice is limited by a lack of services due to underfunding. The document calls for improved coordination, a national inquiry, mandated joint commissioning, and greater transparency and accountability in funding to better meet the needs of children requiring palliative care and their families.
Kath Sutherland presented on providing effective person-centered support for those at the end of life. She discussed how removing barriers through responsive, coordinated services based on co-production principles can support individuals' needs, wishes and circumstances. This requires considering individuals holistically, utilizing local resources, addressing impacts on health/social care, and investing in proven support methods, research, training and implementation support.
Steve Laitner on integrated care - innovations in the UKThe King's Fund
Dr Steve Laitner, GP and Associate Medical Director of NHS East of England, discusses integrated care innovations in the UK with a focus on pathway hubs.
Chris Ham on making integrated care happen at scale and paceThe King's Fund
Chris Ham, Chief Executive at The King’s Fund, highlights the 16 lessons needed to make a reality of integrated care, drawing on work by the Fund and others to provide examples of good practice.
The document discusses supporting staff who work in stressful healthcare environments. It describes how the Point of Care Foundation works at various levels to help staff flourish, such as by raising awareness of effective support methods and providing training. Schwartz Rounds are discussed as one approach to addressing challenges staff face by allowing them to share difficult experiences in a supportive setting. Research shows links between staff wellbeing, engagement, and positive patient experiences. The framework proposes primary, secondary, and tertiary interventions for supporting staff wellbeing at the individual, team, and organizational levels to help prevent and address stress.
This document discusses personal health budgets in the UK NHS. It provides background on personal health budgets, which allow patients more choice and control over how their health needs are met. The document outlines several pilots of personal health budgets, including one focused on delivering them in end-of-life care. It shares early experiences from different pilot sites, finding that personal health budgets improved outcomes and choices for patients while often costing less than traditional care packages. The document provides resources for learning more about personal health budgets and their implementation in the NHS.
Denise Heals presents on her role developing end of life care practices for people with learning disabilities. She outlines approaches used like working with managers and staff in one-off sessions or over 12 months using person-centered thinking tools. Examples of developments include end of life care plans, memorials for residents, and cultural changes at hospices like link nurses and accessible resources. The impact has been greater understanding of end of life care, more open discussions, and improved policies.
The document provides an overview of the Irish Hospice Foundation's Changing Minds project which aims to improve end-of-life care for people with dementia through three key outcomes: prioritizing palliative care, improving end-of-life care in residential settings, and increasing public awareness and advance care planning. The project involves developing resources for staff, families, and people with dementia, providing education and training, and supporting service development initiatives including grants and improving support for home deaths. The goal is to enhance care quality and dignity at the end of life for people with dementia.
Judith Smith and Chris Ham: Commissioning integrated care - what role for cli...The King's Fund
Dr Judith Smith, Head of Policy at the Nuffield Trust, and Professor Chris Ham, Chief Executive of The King’s Fund, share the findings of their recent research into how NHS commissioners have been commissioning better integrated services and care for people in local areas.
Deirdre Shanagher and Sarah Cronin presented at an MS Ireland Information Day on challenges of end of life care for progressive neurological patients. They discussed the Irish Hospice Foundation's vision of ensuring all receive end of life support and care. Group work identified needs of neurological patients like long illnesses, recognizing end stages, and complex care. Issues in care discussions included sensitivity, access to palliative services, and timing conversations. Identifying and responding to care needs means providing information, support, and awareness to prompt conversations.
This document summarizes a presentation about end of life care for people with dementia. It discusses what people with dementia say about end of life care, including challenges around communication and acknowledging loss. It also examines the palliative care needs of people with dementia, noting issues around symptoms, care transitions and multidisciplinary support. Further, it outlines how incorporating a palliative approach into routine dementia care can help with advance care planning, loss and grief, and staff education. Finally, it analyzes how supporting people with dementia to die at home requires individualized care, future planning, symptom management and access to family and community support services.
This document summarizes a meeting of the Hertfordshire and West Essex Sustainability and Transformation Partnership about population health management. The meeting included presentations on the national context of population health and PHM, developing PHM locally, and next steps. It discussed the role of elected members in improving health outcomes and wellbeing for residents. Attendees considered developing a population health strategy and wider determinants of health. The goal is to improve physical and mental health across the population through data-driven care that addresses health inequalities.
This document discusses supporting people with dementia to die at home in Ireland. It identifies key factors that enable home death, including availability of family/friend care, decision making between the person and family, and access to GP and homecare supports. While home death remains rare for those with dementia, the document recommends increased palliative care, support for home care, and nationally recognized tools to plan for end of life care needs.
This document summarizes the author's work partnering palliative care and learning disability services. It describes establishing partnerships between local commissioners to address the needs of people with learning disabilities receiving end-of-life care. This included conducting a needs assessment, launching a training program for both services, holding educational events, and establishing resources. The author also presented their model of partnership to other London boroughs, who then set up their own end-of-life care working groups based on the success of the program.
Dementia friendly communities - my talk this eveningshibley
This is the talk I gave on dementia friendly communities this evening at BPP Law School. It is part of a public lecture series for raising awareness about English dementia policy for the general public. The lectures are provided completely free of charge.
Co-production, co-design and co-construction of dementia policyshibley
This document discusses co-production, co-design, and co-construction of dementia policy. It notes that 47 million people worldwide live with dementia, including around 850,000 people in the UK. It emphasizes that health and social care services should make use of the insights and skills of those using the services, and that genuine collaboration is needed between those with lived experience of dementia and professional expertise. The document explores different approaches to co-production, co-design, and how greater involvement of those with dementia and their unpaid carers is important for more effective policy.
Cure care and research in English dementia policyshibley
I set out to make current dementia policy in England open to the public. This is the final talk to be given by me, Dr Shibley Rahman, at BPP Law School this evening, on cure, care and research.
This document summarizes a presentation on raising awareness of international human rights as they relate to advocacy for those with dementia. It discusses philosophers like Dworkin who argued that individuals have interests they are entitled to protect. A human rights approach makes people aware of their rights and increases accountability. A survey of 55 people found mixed awareness of rights for those with dementia under the European Convention, such as privacy but no right to diagnosis or personal budgets. Overall it presents a mixed picture on rights-based consciousness for advocacy.
Caring for a vulnerable person should be a noble calling, inspired by love and affection for the individual and sustained by the support of a caring community. The reality of life as a Carer for most people in South Africa cannot be further removed from this ideal.
This document discusses care of patients with dementia. It begins by providing statistics on dementia prevalence worldwide and in India. It then defines dementia and lists its common causes and warning signs. The main rules of care are outlined as well as guidance for activities of daily living like eating, communication, preventing wandering, bathing, toileting, dental care, grooming, and dressing. Recommendations are provided for adapting the home environment for safety and to aid with orientation.
This document provides information about Alzheimer's disease and dementia. Some key points:
- Alzheimer's disease is the most common form of dementia and causes nerve cell death and brain tissue loss. It is progressive, irreversible, and fatal.
- The first case was identified in 1901 by Alois Alzheimer. The term "Alzheimer's disease" was coined in 1910.
- Risk factors include genetic mutations, age, and lifestyle. The disease develops due to plaques, tangles, and neuronal loss in the brain.
- Symptoms start with mild cognitive decline and progress to severe cognitive and physical impairment. It affects memory, thinking, behavior, and ability to perform daily tasks.
- Over 5 million
This document provides an overview of the chapters in a book about living well with dementia. Chapter topics include living well for specific groups, young onset dementia, delirium and dementia, caregiving, framing the narrative of dementia, using personal budgets, nutrition, art and creativity, reminiscence through sports, incontinence, global perspectives, housing, behaviors and safety, social networks and innovation, leadership, whole person care, and conclusions. The chapters will cover specialized needs, genetics, policy issues, caregiver support, reducing stigma, personalization, memory techniques, and promoting overall well-being and independence for those living with dementia.
4 February 2017 Dr Shibley Rahman book launchshibley
This event is celebrating the publication of Dr. Shibley Rahman's new book on integrated care for dementia. It will take place on February 4, 2017 at the Arlington Centre in Camden, London. The afternoon will include talks from experienced speakers in their fields on topics related to integrated care such as preventing excess disability, technology, acute hospital care, care homes, hospice care, and living at home with dementia. There will then be a panel discussion between the speakers. The goal is to consider how to provide outstanding quality care for those living with dementia across all care settings.
This document summarizes a workshop on addressing the palliative and end-of-life care needs of people with dementia in hospitals. The workshop covered challenges in caring for people with dementia, communication strategies, recognizing dementia as a life-limiting illness, assessing pain and symptoms, the role of multidisciplinary teams, and available resources from the Irish Hospice Foundation. The presentation emphasized taking a person-centered approach, advance care planning, continuity of care, and the importance of staff training to meet the complex needs of people with dementia at the end of life.
Explores palliative and end of life care. Outlines advance care planning and provides information about planning ahead to include using advance healthcare directives
The document announces the 7th International Conference on Dementia and Care Practice to be held in Toronto, Canada from August 14-16, 2017. The conference will bring together over 400 participants from around the world to discuss the latest research on dementia diagnosis, treatment, and care practices through keynote lectures, oral presentations, symposiums and workshops. The main theme of the conference is "Discernment into innovative research and care practice approaches towards Dementia".
Al Power - Dementia beyond disease: Enhancing well beingRunwaySale
This document discusses moving beyond a biomedical model of dementia to focus on enhancing well-being. It notes that antipsychotic drug use is widespread but provides little benefit, and instead risks increasing mortality. A new model defines dementia as a shift in experiencing the world, prioritizing domains like identity, connectedness and meaning over symptom reduction. Culture change is needed to operationalize this philosophy through physical environments, decision-making processes, and personal perspectives that support well-being.
The document discusses supporting people with dementia at end of life. It outlines the Irish Hospice Foundation's (IHF) vision of ensuring dignity and comfort for all facing end of life. The IHF runs several programs, including on palliative care and bereavement. Data shows more people with dementia die in care homes than at home. The IHF nurses service data found most referrals were older adults and from certain areas. Literature suggests place of death is influenced by illness factors and care circumstances. The document outlines IHF education initiatives to improve end of life care and communication for people with dementia, their families, and staff. It stresses the importance of person-centered communication and considering the emotional needs of those with dementia.
This summer, as co-founder and immediate past chair of the APA Caucus on Global Mental & Psychiatry (GMH), I had the opportunity to promulgate the GMH movement in two countries – Bulgaria and Brazil (see Di Nicola, 2012).
This is my brief comparative report published in the September 2017 issue of the Global Mental Health & Psychiatry Newsletter of the Washington Psychiatric Society, Volume III, Issue 3: 4-5.
In March this year, Harbinger Consultants trialled an initiative in health promotion to raise awareness of dementia. The initiative sought to: raise money for dementia research through a sponsored 50km bike ride; and raise awareness of brain health and dementia through a BBQ breakfast event. Based on an action research approach, the idea of the Brainy Breakfast BBQ was to bring people together in a convivial environment to exchange information, share stories and generally catch up. This document reports on the event and provides recommendations for ongoing development of this initiative.
This document provides an overview of a university course on Canadian health policy relating to mental health and addictions. It includes topics that will be covered in an upcoming lecture, potential topics for student briefing notes, and news articles relevant to mental health issues. Briefing note topics focus on policy issues around mental health, addictions, and chronic disease prevention. The lecture will cover trends in mental illness, approaches to mental health care, stigma, trauma, self-medication, principles of recovery and harm reduction.
Person centered care models with reference to dementia care, has demonstrated positive outcomes for behavioral disturbance. This presentation will increase awareness and understanding about person-centered care for people with dementia. Discussion includes complex needs of people with dementia, leading to compromised behavioral symptoms; including non-pharmacological approaches, sleep-wake-cycle disturbance, verbal outbursts and aggression. Further discussion encompasses evidence based outcomes with the use of person centered care that focuses on preserving the "personhood" of the individual.
This document provides information about dementia to general practice staff to help their understanding of the condition. Some key points:
- Dementia affects over 850,000 people in the UK, including around 20,000 in Hampshire. The risk increases significantly with age.
- Early diagnosis allows more time for planning and managing the condition. However, only 1/3 of people with dementia have a proper diagnosis.
- The document outlines ways practices can become more dementia-friendly, such as ensuring staff are aware of patients' diagnoses, allowing longer appointments, and including family in care decisions.
- It emphasizes the importance of support for carers, and provides resources for further information.
This document provides an overview of the history of mental health and psychiatric nursing. It discusses how mentally ill patients were initially persecuted and segregated from society. It then outlines the humanitarian period where more asylums were established to provide care, though nursing was still not mentioned. The beginning of the scientific attitude saw the development of classifying mental illnesses. Key figures like Pinel in France and Tuke in England removed chains from patients and advocated for more humane treatment. The document also briefly discusses the development of psychiatric nursing in other countries like France where Pinel removed chains from patients.
The Behavioral Health Faith Summit 2015 will take place on April 16th. The day will include a plenary session on balancing religious counseling, psychotherapy, and psychiatry. Featured workshops will explore support for clergy and their well-being, mental health policy challenges, and the intersection of spirituality and severe mental illness. The keynote speaker will be Kevin Hines, a mental health advocate and author. Additional workshops will address issues such as grief, veterans' mental health, the black church, personal experiences of spirituality and mental illness, child and adolescent mental health, suicide prevention, college student mental health, addictions, and domestic violence.
Alzheimer's Presentation Final Please Do Not EditReagen Dozier
The document provides information on Alzheimer's disease including statistics, risk factors, effects on minority populations, counseling and treatment options, prevention strategies, and challenges. It notes that over 5 million Americans have Alzheimer's, a number expected to rise dramatically in coming decades. Early detection is important to help patients and caregivers better cope. Future research hopes to find new treatments and a cure for the progressive brain disorder.
Critically discuss whether and how the residential living arrangements of tho...Jemma Bateman
This document discusses how the residential living arrangements of those with dementia can impact psychological well-being. It explores whether living at home or in a care home is better. Living at home can help maintain independence but can lack supervision and assistance with tasks. A care home can provide daily routines, encouragement, and help with needs like eating, hygiene and sleep, but removes independence. Psychological well-being is also impacted by the stage of dementia, with higher support needed in later stages. The document considers factors like competence, stress, independence, boredom, health, hygiene and sleep in relation to well-being. It also discusses the toll on carers' well-being and argues intervention and support are important.
Neurological Science Journal, 2017, Vol. 1 No. 1:7. Available in://www.imedpub.com/neurological-science-Journal. The goal is to inform the reader that higher education is a significant player in supplying proficient practitioners, and health care professionals, the necessary skills to administer care to dementia clients.
Similar to Living well with dementia - my book launch 15th February 2014 (20)
What carers of people with dementia need to know about deliriumshibley
The accurate identification of delirium for carers of people with dementia is of critical importance as delirium is a medical emergency. This short presentation is given by Dr Shibley Rahman to Camden Carers on World Delirium Awareness Day 2022 #WDAD2022
This document provides an overview of delirium, including what delirium is, how it should be assessed and managed both pharmacologically and non-pharmacologically, how delirium relates to dementia, and potential risk factors, causes, and complications of delirium. It also discusses the importance of patient-centered care and assessing capacity within the legal framework for practice in dealing with patients experiencing delirium.
Why person-centred care matters : Dr Shibley Rahmanshibley
Talk by Dr Shibley Rahman on 5 November 2019
Princess Alexandra Hospital
"Dementia - delirium - frailty: together, enhancing patient care"
https://twitter.com/Deliri_m
The document discusses the benefits of an assets-based approach which includes helping to develop more sustainable initiatives, empowering people, and identifying how individuals can use their talents. It also discusses how social resources like social capital are linked to reduced loneliness among older people by creating social networks and support within communities. Rahman and Swaffer (2018) discuss how the assets approach helps rebuild confidence and motivation by understanding what is needed for individuals to do well, and that it relies on active disability support.
The document discusses frailty and an assets-based approach to health. It defines frailty as a state of vulnerability caused by cumulative decline in physiological systems over a lifetime. While clinicians often recognize frailty when they see it, formal definitions use criteria or a frailty index score. The document also notes that older adults may see "frail" as a negative label and stigma can prevent people from seeking help. It then introduces an assets-based approach, which focuses on identifying protective factors that promote health and well-being, rather than only physical deficits. Potential advantages of this approach listed are helping people think positively, being realistic by identifying available resources, and facilitating independence, interdependence, and valuing others.
This document provides information on delirium, including guidance documents, papers, and potential subject areas for training on delirium awareness, identification, and prevention. It outlines key learning outcomes and target audiences for each subject area. The subjects cover delirium awareness for all healthcare workers, identification and assessment of delirium for direct care staff and experts, and risk reduction and prevention strategies. National standards and legislation relevant to each subject are also listed.
This document discusses person-centered care in acute hospitals. It references several sources that discuss dementia friendliness in hospitals and examples of where person-centered care fails, such as long wait times in the emergency room, being transferred between wards and medical teams without notice, and staff not properly introducing themselves or explaining medical procedures to patients. The document argues that person-centered care in hospitals requires more than just making the physical environment dementia-friendly and should focus on properly communicating with and involving patients in their care.
My talk to be given on 4 February 2017 in the Arlington Centre, Camden, to celebrate my third book 'Enhancing health and wellbeing in dementia: a person-centred integrated care approach".
Talk by Dr Shibley Rahman 5 - 5.30 pm British Geriatrics Society meeting on the gulf between aspirations and the reality of delivery of dementia care in acute NHS hospitals.
Dementia is a complex condition that affects memory, thinking and behavior. This short article discusses testing for dementia and whether people would want to know if they have early signs of the condition. The author is Dr. Shibley Rahman, a medical doctor with advanced degrees in public health, medicine and law.
Dr Shibley Rahman presentation on citizenship and dementiashibley
This is the talk I intend to give at the Arlington Centre on Saturday 11th July 2015. It centres around active citizenship of people with dementia, shaping the general discourse about dementia.
Would knowing your genetic risk for dementia change the way you behave with t...shibley
This document summarizes an online survey that examined whether knowledge of genetic risk for dementia would change how people in the UK interact with the National Health Service. The survey used a sample of 125 respondents recruited from Twitter and found that knowledge of genetic risk may not drive people to behave like traditional private insurance markets. The discussion notes the sample was limited and a larger study is needed, but results suggest people prioritize their own health over financial risk and appreciate environmental factors in dementia.
An analysis of 75 English language web articles on the G8 dementia summit shibley
This document summarizes an analysis of 75 English news articles about the 2014 G8 dementia summit. The analysis found a bias toward portraying dementia as a medical condition requiring treatment and cures. Words like "research", "data", and "treatments" were frequently used. In contrast, terms around care, social aspects, and the experiences of those with dementia appeared less. The coverage focused mainly on Alzheimer's disease and presented dementia as a problem biomedical research should address, rather than considering broader environmental and social factors.
Who were the biggest winners and losers of the G8 dementia summit? My survey ...shibley
The survey of 96 UK residents without dementia found that most had not seen media coverage of the G8 dementia summit on TV or radio, but had seen coverage online. While most thought the summit topic was significant, over half did not think it was a "game changer." Respondents also consistently did not view responses to dementia as a "fight," "war," or "battle." Most thought it was appropriate to talk about 'living with dementia' in early stages rather than 'suffering from.' The conclusions were that reports from other organizations would provide more perspective, and that cumulatively the results demonstrate an unhealthy public perception of the dementia agenda in England in terms of who sets priorities and benefited from the summit.
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Basavarajeeyam is a Sreshta Sangraha grantha (Compiled book ), written by Neelkanta kotturu Basavaraja Virachita. It contains 25 Prakaranas, First 24 Chapters related to Rogas& 25th to Rasadravyas.
Does Over-Masturbation Contribute to Chronic Prostatitis.pptxwalterHu5
In some case, your chronic prostatitis may be related to over-masturbation. Generally, natural medicine Diuretic and Anti-inflammatory Pill can help mee get a cure.
Integrating Ayurveda into Parkinson’s Management: A Holistic ApproachAyurveda ForAll
Explore the benefits of combining Ayurveda with conventional Parkinson's treatments. Learn how a holistic approach can manage symptoms, enhance well-being, and balance body energies. Discover the steps to safely integrate Ayurvedic practices into your Parkinson’s care plan, including expert guidance on diet, herbal remedies, and lifestyle modifications.
Rasamanikya is a excellent preparation in the field of Rasashastra, it is used in various Kushtha Roga, Shwasa, Vicharchika, Bhagandara, Vatarakta, and Phiranga Roga. In this article Preparation& Comparative analytical profile for both Formulationon i.e Rasamanikya prepared by Kushmanda swarasa & Churnodhaka Shodita Haratala. The study aims to provide insights into the comparative efficacy and analytical aspects of these formulations for enhanced therapeutic outcomes.
Muktapishti is a traditional Ayurvedic preparation made from Shoditha Mukta (Purified Pearl), is believed to help regulate thyroid function and reduce symptoms of hyperthyroidism due to its cooling and balancing properties. Clinical evidence on its efficacy remains limited, necessitating further research to validate its therapeutic benefits.
TEST BANK For Basic and Clinical Pharmacology, 14th Edition by Bertram G. Kat...rightmanforbloodline
TEST BANK For Basic and Clinical Pharmacology, 14th Edition by Bertram G. Katzung, Verified Chapters 1 - 66, Complete Newest Version.
TEST BANK For Basic and Clinical Pharmacology, 14th Edition by Bertram G. Katzung, Verified Chapters 1 - 66, Complete Newest Version.
TEST BANK For Basic and Clinical Pharmacology, 14th Edition by Bertram G. Katzung, Verified Chapters 1 - 66, Complete Newest Version.
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Living well with dementia - my book launch 15th February 2014
1. This version does not include the personal
messages by Kate Swaffer nor Norman McNamara
to my guests. It otherwise is a faithful record of the
talks to be given in Camden on 15 February 2014.
2. Introduction to
Dr Shibley Rahman
Queen‟s Scholar BA(1st) MA MB BChir PhD (Cambridge)
MRCP(UK) LLB(Hons) LLM MBA FRSA
BPP Diploma in Professional Legal Practice
February 15th 2014
3.
4.
5.
6.
7. 3.00 pm Registration
3.20 pm Presentation 1
What do we mean by 'living well with dementia‟?
4.05 pm Coffee and other refreshments
4.30 pm Presentation 2
Strategies for 'living well with dementia‟
5.15 pm Discussion session
7 pm dinner
10. 1. The need to raise awareness of the dementias
2. Forewords
3. Contents of the book
4. What is wellbeing?
What is personhood?
What is dementia?
5. Practical issues about wellbeing
6. Promoting wellbeing
7. Contemporary challenges
e.g. wandering
11. 1. The need to raise awareness of the dementias
21. NICE QS30: Quality standard for supporting people to
live well with dementia
It applies to all social care settings and services working with
and caring for people with dementia.
It should be read alongside the NICE Dementia quality
standard QS1.
22.
23. The “Dementia Challenge”
There are 3 dementia challenge champion groups, each focusing on 1 of the main areas for action:
driving improvements in health and care, creating dementia friendly communities and improving
dementia research.
and #G8dementia
•
•
•
•
•
•
significantly increase the amount spent on dementia research
increase the number of people involved in clinical trials and studies on dementia
establish a new global envoy for dementia innovation
develop an international action plan for research
share information and data from dementia research studies across the G8 countries
encourage open access to all publicly-funded dementia research to make data and results available
for further research as quickly as possible
24.
25.
26.
27.
28.
29. 2. Forewords by Prof Hodges (Professor of Behavioural
Neurology, University of Cambridge UK), Prof
Facundo Manes – Vice Chair of the research group for
cognitive and aphasias for the World Federation of
Neurology (and the University of Favorolo, Argentina)
and Sally Marciano (UK)
36. “I am not an academic but I am a nurse, whose wonderful
father died of Alzheimer’s in September 2012. Nothing
during my training or nursing career could have prepared
me for the challenge that came with supporting my mother
in my father’s journey with dementia.”
Sally Marciano [Foreword]
38. Dedication
Acknowledgements
Foreword by Professor John Hodges
Foreword by Sally Ann Marciano
Foreword by Professor Facundo Manes
Introduction
What is „living well with dementia‟?
Measuring living well with dementia
Socio-economic arguments for promoting living well
with dementia
39. A public health perspective on living well in dementia,
and the debate over screening
The relevance of the person for living well with dementia
Leisure activities and living well with dementia
Maintaining wellbeing in end-of-life care for living well
with dementia
Living well with specific types of dementia: a cognitive
neurology perspective
General activities which encourage wellbeing
40. Decision-making, capacity and advocacy in living well
with dementia
Communication and living well with dementia
Home and ward design to promote living well with
dementia
Assistive technology and living well with dementia
Ambient-assisted living and innovation culture
The importance of built environments for living well with
dementia
49. Personhood : A standing or a status that is bestowed upon one human
being, by others, in the context of relationship and social being. It
implies recognition and trust.
“We need professionals to work with us, not exclude us and realise we
are often the key to understanding the person with dementia”
Uniting Carers, Dementia UK
SCIE personalisation
Whole person care
Individualised budgets
50.
51. Edana Minghella:
Pathways to
Dementia Diagnosis –
“Dementia
partnerships”
Concerns often not taken seriously
Poor experiences in first clinical
encounter
Some GPs had “ambivalent views”
Mixed experiences in postdiagnostic support
56. “I don't believe anyone has any particular "authority" on
dementia, apart from the persons who are living with
dementia and the people who care for them. Nobody has
all "the right answers" in research.”
Whose Shoes blogpost
Published today.
57. Lucy Jane Marsters
Dr Muna Al Jawad
The badges have appeared in
Scotland, Iceland, Australia.
71. “The first thing that struck me is how violent the rhetoric
suddenly seems. David Cameron and Jeremy Hunt use
the language of war: "fight-back", "stealing lives",
"explosion", "shock", "timebombs" and so on.”
72. “They discuss dementia as if it were both news that we were
unaware of and that it is somehow our collective fault for
being unaware of it. It may well be news to them, but it is
certainly not news to, nor the fault of, those of us who
have been dealing with dementia in our families, or
fundraising, or trying to get decent quality services.”
83. 1. The need to raise awareness of the dementias
2. Forewords
3. Contents of the book
4. What is wellbeing?
What is personhood?
What is dementia?
5. Practical issues about wellbeing
6. Promoting wellbeing
7. Contemporary challenges
e.g. wandering
88. 1. The need to raise awareness of the dementias
2. Forewords
3. Contents of the book
4. What is wellbeing?
What is personhood?
What is dementia?
5. Practical issues about wellbeing
6. Promoting wellbeing
7. Contemporary challenges
e.g. wandering
93. Problems swallowing –
Beth Britton
D4Dementia blog
“The other key factor in dysphagia management is the
consistency of all the foods, drinks and liquid medications
given to the person with the condition. Powder thickeners
are often prescribed to help with this, but it must be
remembered that having things too thick is as dangerous
as too thin. Too thick and our experience was that it would
stick in dad’s mouth/throat, causing coughing.”
[From “Hard to swallow” 12 September 2012
http://d4dementia.blogspot.co.uk/2012/09/hard-toswallow.html]
100. Social Care Institute for Excellence
• Choice and control are key defining aspects of dignity.
•
• Withdrawal of respect inhibits choice and control.
• Treat people as equals, ensuring they remain in control of what
happens to them.
• Empower people by making sure they have access to jargon-free
information about services when they want or need it.
106. • Care staff may find it difficult to raise the subject of end of
life care, but training and support will help them become
more confident.
• Making treatment decisions on behalf of another person
places an emotional burden on family carers, but care
staff can help by informing them about what is happening
and what to expect.
116. Five key aims
Carers of people with dementia:
• have recognition of their unique experience
• are recognised as essential partners in care
• have access to expertise in dementia care for personalised information, advice, support and coordination of care for the person with dementia
• have assessments and support to identify the on-going and changing needs to maintain their own
health and well-being
• have confidence that they are able to access good quality care, support and respite services that are
flexible, culturally appropriate, timely and provided by skilled staff for both the carer and the person for
whom they care
118. Darren Gormley
2,500+ home visits in 6½ years.
“Older people in the media” awards
- “Best factual new media content about older people‟s
issues‟
- „Best overall contribution to the debate on older people‟s
issues‟
119.
120.
121.
122. Sporting Memories Network
Tony Jameson-Allen
2009 Scottish Football Reminiscence Project
2010 Glasgow Caledonian University (contribution to
wellbeing, including self-confidence, self-expression,
sociability nad enjoyment)
123.
124. "As Prime Minister, I was lucky enough to attend a number
of events at both the Olympic and Paralympic Games and
my memories of cheering on our competitors will, I hope,
remain with me forever. This is the very reason that
initiatives such as the Sporting Memories Network are so
valuable and I thank you for your work in this area”
David Cameron
Prime Minister
126. Episodic recollection of personal events from one‟s own life
is referred to as autobiographical memory.
During autobiographical recall, spatially and temporally
bound information is retrieved and the relevant scene
vividly reconstructed.
This is accompanied by a feeling of reminiscence, where
the self being remembered is the same self engaged in
recollection, and the re-experiencing of these memories
may elicit strong emotions.
(Nathan Spreng, Mar and Kim 2008 Journal of Cognitive
Neuroscience 21:3, pp. 489–510)
127. Smith AP, Henson RN, Dolan RJ, Rugg MD. (2004) fMRI correlates
of the episodic retrieval of emotional contexts. Neuroimage.
Jun;22(2):868-78.
131. “Mum sang anything and everything. She was brilliant at
harmonising, coming in below the melody and swooping
around, and before you knew it you were partaking of
something rather fun.”
“Mamie Baird Magnusson was a dab hand with the mouth
organ too, coming from a time and place where people
made their own entertainment. In her Rutherglen council
house her dad had a violin and there was an inherited
organ too.”
[The Scotsman, 2 February 2014]
132. Dancing
- e.g. Dr Guzmán García, improvements in mood and quality
of life
Gardening
- e.g. enjoyable, enables people to enjoy outside spaces,
sensory stimulation
138. Assistive technology
The term 'assistive technology' refers to
'any device or system that allows an individual to perform a
task that they would otherwise be unable to do, or
increases the ease and safety with which the task can be
performed' (Royal Commission on Long Term Care,
1999).
139.
140.
141. Ambient assisted living
“Age in place”
„increasing their autonomy and assisting them in carrying out
activities of daily life‟ (Wojciechowski and Xiong, 2008)
152. Quality of life improves with an outdoor space or garden
giving people the chance to:
• be physically active
• feel unrestrained
• be more in touch with nature
• be alone if they want to be
• socialise if they want to
• do meaningful things that make them feel at home.
153. A dementia-friendly facility aims to support independence
and mobility in a safe and secure environment.
Many familiar activities take place in gardens and outside
spaces and are a normal part of everyday life, e.g.
hanging out washing.
Older people want design features that make up for physical
impairment and support safe passage.
Recreational gardening can be social and private.
Gardening spots of privacy and reflection are important in
shared living environments.
161. Inclusivity
The British Standards Institute (2005) defines inclusive
design as "The design of mainstream products and/or
services that are accessible to, and usable by, as many
people as reasonably possible ... without the need for
special adaptation or specialised design.”
172. Advocacy is, according to the Advocacy Charter:
"…taking action to help people say what they want, secure
their rights, represent their interests and obtain services
they need. Advocates and advocacy schemes work in
partnership with the people they support and take their
side. Advocacy promotes social inclusion, equality and
social justice”
177. 1. The need to raise awareness of the dementias
2. Forewords
3. Contents of the book
4. What is wellbeing?
What is personhood?
What is dementia?
5. Practical issues about wellbeing
6. Promoting wellbeing
7. Contemporary challenges
e.g. wandering
179. A real need to include people with dementia in service/policy
design and the direction of research (which might include
wellbeing as well as neuropharmacological approaches.)
Jane Moore, a carer from Camelford, and Norrms McNamara, who has dementia and was a driving force behind the creation of the first dementia friendly community in the UK, produced the original design.Lynette Richards and Jeff Talbot produced the global version.
Published on 3 February 2009.This strategy provides a strategic framework within which local services can:- deliver quality improvements to dementia services and address health inequalities relating to dementia;provide advice and guidance and support for health and social care commissioners and - providers in the planning, development and monitoring of servicesprovide a guide to the content of high-quality services for dementiaDue to run for 5 years.About to be assessed and renewed.
BRACE is a registered charity that funds research into Alzheimer’s disease and other forms of dementia.Their role is to help medical science understand the causes of dementia, find ways of diagnosing it earlier and more accurately, and develop more effective treatments. Ultimately, we want to help science beat dementia.They raise funds through voluntary donations, sponsorship, legacies and fundraising events.They spend that money by supporting research at universities in the West of England and South Wales. All the research we support has been peer reviewed and assessed by a committee that includes senior scientists.Filmmakers and scientists came together at this event to increase the public understanding of dementia on 20 Mach 2013..A series of short films about dementia, curated by local filmmaker James Murray-White, preceded a discussion with researchers from the University of Bristol and other institutions supported by BRACE.
This viewing of films preceded 8 February 2014: 9.30am - 5.00pmMAKING SENSE OF DEMENTIAPsychoanalytic PerspectivesThis conference is a bid to answer the question “What can psychoanalysis offer in the understanding and treatment of Dementia?” and is addressed to people with dementia, their carers, psychotherapists of all orientations and other health professionals.
Beth’s father had vascular dementia for 19 years. It began when Beth was around 12 years old and would go on to dominate my teens and twenties. Beth’s Dad went 10 years without a diagnosis and then spent 9 years in 3 different care homes. Beth passed away in April 2012 aged 85.Beth describes “a myriad of health and social care services that varied from excellent to exceptionally poor. What all of those experiences had in common, however, was what could be learnt from them to improve knowledge, awareness and care for all.”In May 2012 she launched “D4Dementia” blog.
“Their message has been very clear – they want to live the best quality of life possible. They want to do the things that they enjoy, to continue to make a contribution to their communities in the way that they decide is important to them.”
While I was writing my book, this suddenly happened.Owen Paterson.This quality standard covers the care and support of people with dementia.It applies to all social care settings and services working with and caring for people with dementia.It should be read alongside the NICE Dementia quality standard QS1 which covers care provided by health and social care staff in direct contact with people with dementia in hospital, community, home-based, group care, residential or specialist care.
The countries agreed to:set an ambition to identify a cure, or a disease-modifying therapy, for dementia by 2025significantly increase the amount spent on dementia researchincrease the number of people involved in clinical trials and studies on dementiaestablish a new global envoy for dementia innovation, following in the footsteps of global envoys on HIV and Aids and on Climate Changedevelop an international action plan for researchshare information and data from dementia research studies across the G8 countries to work together and get the best return on investment in researchencourage open access to all publicly-funded dementia research to make data and results available for further research as quickly as possible.The dementia challenge is an ambitious programme of work designed to make a real difference to the lives of people with dementia and their families and carers, building on progress made through the National Dementia Strategy. There are 3 dementia challenge champion groups, each focusing on 1 of the main areas for action: driving improvements in health and care, creating dementia friendly communities and improving dementia research.
Norman McNamara and me.Madonna.YouTube.A recurrent theme in my talk is listening to person’s views.
Norman McNamara from Devon was diagnosed with dementia three years ago when he was just 50.Although his father and grandmother had suffered from the condition, Mr McNamara did not expect it to be part of his future.He said: It was never really in the back of my mind that I might get it."I think it came to a head when I set the kitchen on fire three times."
Chris referred to the term "dementia sufferers". “I leave it with you, you write more than me. I suffer more than live well, but that’s just me. Striving to control what’s going on and keeping oneself whole is very trying . But as you say, not always politically correct”Tommy Whitelaw.
“I feel a tremendous honour that I have been asked to write a foreword to Shibley’s outstanding book. I am not an academic but I am a nurse, whose wonderful father died of Alzheimer’s in September 2012. Nothing during my training or nursing career could have prepared me for the challenge that came with supporting my mother in my father’s journey with dementia. I have never met Shibley in person, which makes being asked to write this even more special. What we do have in common, however, is real passion for raising profile of dementia and a hope that we can – one day –improve care for all those living with dementia.Many people with dementia will live for many years after their diagnosis, and it should be everyone’s ambition in health and social care to ensure that those living with dementia do so as well as possible for all of the remaining years of their life. Diagnosis is just the start of the journey, and, with that, should come full care and support to allow those with dementia to live where they wish, and with their closest present every step of the way.”
In prioritising service user values and experience, says its champions, VbC aims to address the whole person. Value therefore follows - services can offer real value to the service user while also being cost effective for the service they use.“It’s about creating new models of collaborative care, deinstitutionalising patients, and increasing the ability for people to keep their home, their job, their relationship. Rather than focusing on outputs, this is about outcomes. The service should be measured in terms of the wellbeing and quality of life it results in.”
Sonya Lyubomirsky – University of CaliforniaTheory and research suggest that people can increase their happiness through simple intentional positive activities, such as expressing gratitude or practicing kindness.Despite evidence suggesting that individual differences in well-being are strongly influenced by genetics , researchers theorize that much of people’s happiness is under their control through intentional activities.Research has been a mess though has been growing in recent decades.However, very early on in the research Ryff and Keyes (1995) identified that ‚the absence of theory-based formulations of well-being is puzzling‛ (pp. 719–720). The question of how wellbeing should be defined (or spelt) still remains largely unresolved, which ‚has given rise to blurred and overly broad definitions of wellbeing‛.As interest in the measurement of wellbeing grows, there is a greater necessity to be clear about what is being measured.
Figure 3.1 demonstrates how psychological definitions of subjective wellbeing occupy a grey area, with some viewing psychological wellbeing as synonym- ous with subjective wellbeing, and others seeing it as distinct. While sensing value in models that measure wellbeing in terms of the balance between positive and negative feelings, and affect, Hird (2003) concludes that in practice the distinctions drawn between ‘happiness’, ‘affect’ and ‘life satisfaction’ may not be so important. Economists and sociologists also use data related to individuals’ perception of their circumstances, such as self-rated physical healthiness or whether individu- als think that they have a lot of money or live in a safe neighbourhood. These somewhat disparate approaches to subjective wellbeing reflect the breadth of definitions given to it, and the large number of potential influences upon it.
Definition of iPerson : People who are so consumed in their iPod culture that they never are actually seen without earbuds in their ear, and an iPod proudly displayed.
Person-centred care is often cited as an aim of gerontological nursing and promotion of personhood is said to be the basis for person-centred care. As such, it forms a cornerstone value for many gerontological nurses, particularly those working in dementia care. Tom Kitwood's ideas and definition of personhood are widely referred to in the literature and used in the dementia care field.
With its international approach, the Stroud/ ADI Dementia Quality Framework even has validity across cultures within and between countries. It is intended as a useful aid for the assessment of services and policies for people with dementia and their family carers. The five themes, interestingly, included a ‘supra-national’ and ‘transcedent’. This offers a system- atic way to judge the efficacy of a service and policy, and can be used by the individuals in the service themselves, clients and inspectors. The ‘inner’ ring refers to individual factors of the ‘domains’ of quality of care, health, communication, environment and personhood; the outer ring refers to societal factors of service funding, public attitudes and policy (see Figure 3.2).
Pathways to dementia diagnosis: A review of services in the South West of England.Many commissioning organisations in the South West have responded to the challenge of improving the diagnosis of people with dementia by exploring new pathways to diagnosis and a variety of models are now emerging.This project found wide variation on how memory problems or other early signs of dementia were dentified in primary care. Sadly, many people living with dementia in all five areas reported poor experiences in relation to their first contact with a professional (usually a GP) about memory or other relevant problems. They found their concerns were not always taken seriously or treated appropriately, despite persisting.GPs mostly regarded the diagnosis as important but some had ambivalent views. The biggest question was whether or not giving the diagnosis was always the right thing forevery patient, especially if the patient themselves had not sought help, for example if referred via the general hospital..People living with dementia – including carers - had mixed experiences regarding post diagnostic support. Where they had it, they welcomed it.
The Memory Assessment Services are run and delivered by strikingly passionate and skilled people, who clearly want to do the best they can for this classically under-served group.But many hoped for more than they were receiving.Where people living with dementia had to wait for assessment and diagnosis, this caused them great distress. A quick response, on the other hand, nearly always came as a relief.What is clear is that people living with an early diagnosis of dementia highly valued information and ongoing support. If they did not have it, they felt very alone, confused about who to call when they needed help, and frequently unconvinced that their own GPs (to whose care most people in the audit were discharged) would be able to help them.
A body of work looking at the experiences of LBGT individuals in health and social care contexts and the ways in which they navigate the disclosure of their sexuality to service providers unfortunately confirms the presence of homophobia (irrational fear of, or aversion to, gay or lesbian people) and heterosexism (the assumption that all people are heterosexual and that heterosexuality is the only “permissible” sexuality). Trust therefore becomes a key issue. LGBT individuals and their partners and friends will need reassurance that their rights to privacy will be respected. Dementia may mean a reduction in the ability to conceal and self-censor behaviour and information disclosure.LGBT individuals may also have concerns about confidentiality, uncertain about who may have access to their personal information. As the data sharing drive continues in the NHS, this may become more of a policy issue in the forthcoming years. This fear may be based on previous bad experiences, and may not trust in representatives of authorities, official organisations and institutions.
In the case of ‘Making it Real’, the I statements are what older and disabled people, carers and citizens expect to feel and experience when it comes to personalised care and support. They are grouped around six key themes: information and advice active and supportive communities flexible integrated care and support workforcerisk enablementpersonal budgets and self-funding. Whose Shoes?® - Making It Real was created by Gill Phillips based on a previous board game version which helps people understand and engage with the personalisation agenda You will see that they match very closely some main themes of my thesis: quality of life (whole book), health and emotional wellbeing (some health aspects are discussed in Chapters 6 and 8), support networks (and dementia-friendly communities, Chapter 17), choice and control (decision-making, Chapter 11), having a voice (advocacy, Chapter 11, and communication, Chapter 12).
The cartoon drawing was created by my colleague - Dr Muna Al Jawad - she is our consultant lead for dementia in our trust but is quite refreshing, even revoutionary in her approach to dementia care - credit must go to her. They were intially created to raise awareness for doctors of our much maligned dementia CQUIN.
However - I realised that that the badges had so much more potential to create more than awareness - they could become part of the fabric of our mantra 'Dementia is everyones business' The aim was to give them out to nurses and other hospital staff, and we gave them out to people completing the dementia education programme. They were instantly popular. Lucy then started to take them with me to events, such as the regional dementia collaborative, and they were given out at a conference held in Sussex on life limiting conditions. The badges have appeared in Scotland, Iceland, Australia.
Published 18 October 2011Recent research found that 43% of cognitively intact patients (mean age 83.7 years at death) had Alzheimer’s disease at necropsy.Worldwide epidemiological follow-up studies showed that the rates of transition between the earliest detectable memory loss and Alzheimer’s dementia is around 33-50% over three years for the type of memory loss considered most likely to be “pre-Alzheimer’s.”These findings suggest a large potential for false positive diagnoses of Alzheimer’s disease.A correct early diagnosis of Alzheimer’s disease could be valuable since it allows informed planning for the future.However, the consequences in falsely diagnosed cases could be grave. Conferring a diagnostic label is far from neutral
The Four Principles, originally devised by Beauchamp and Childress in their textbook Principles of Biomedical Ethics, are considered by many as the standard theoretical framework from which to analyse ethical situations in medicine. While the validity and scope of the principles are often debated, there is no questioning the canonical status of the four principles in the field of Medical Ethics. Briefly, the four principles are,Autonomy – The right for an individual to make his or her own choice.Beneficence – The principle of acting with the best interest of the other in mind.Non-maleficence – The principle that "above all, do no harm," as stated in the Hippocratic Oath.Justice – A concept that emphasizes fairness and equality among individuals.It’s easy to see why the four principles have had such a far-reaching influence in Medical Ethics. The values inherent in the principles clearly resonate with our moral norms, and their practical use in ethical decision making is immediately apparent. As a theoretical framework, the four principles remain as useful today as when they were published over 30 years ago; however, in the same time period, the field has drastically changed.
Dr Neil Chadborn is also a strong advocate for involving patients and carers in service improvement, as well as exploring potential for service users to participate in research and evaluation.
“The first thing that struck me is how violent the rhetoric suddenly seems. David Cameron and Jeremy Hunt use the language of war: "fight-back", "stealing lives", "explosion", "shock", "timebombs" and so on. They discuss dementia as if it were both news that we were unaware of and that it is somehow our collective fault for being unaware of it. It may well be news to them, but it is certainly not news to, nor the fault of, those of us who have been dealing with dementia in our families, or fundraising, or trying to get decent quality services.”
The prevalence of dementia in the population might be subject to change. Factors that might increase prevalence include: rising prevalence of risk factors, such as physical inactivity, obesity, and diabetes; increasing numbers of individuals living beyond 80 years with a shift in distribution of age at death; persistent inequalities in health across the lifecourse; and increased survival after stroke and with heart disease. By contrast, factors that might decrease prevalence include successful primary prevention of heart disease, accounting for half the substantial decrease in vascular mortality,13 and increased early life education, which is associated with reduced risk of dementia. This study provides compelling evidence of a reduction in the prevalence of dementia in the older population over two decades.
14 November 2012 - Jeremy Hunt MP met staff, patients and volunteers during a visit to King’s.He was escorted around the ward’s sensory walk by ward manager, Yamu Njie, Dementia Nurse Specialist, Emma Ouldred and the rest of the team and saw first-hand the ethos and key features that make the ward a safe, comfortable and calming environment for patients.During his visit, Mr Hunt spoke to patients, relatives and staff about the changes to the ward and the special facilities it provides. These include a state-of-the-art sensory room with atomisers, sound and visual equipment, special non-slip flooring to reduce falls and mood lighting to promote calm and relaxation. The ward also includes clearer signage, improved orientation, and a space free of clutter – this makes a huge difference to frightened and confused people with dementia.
Prof Manes is an author for the new diagnostic criteria for the behavioral variant of frontotemporal dementia and for the new classification of primary progressive aphasia and its variants proposed by international working groups. He is currently the principal investigator or co-principal investigator on several trials evaluating potential new therapies in Alzheimer’s disease. He is also an International Advisory Committee Member of the Frontotemporal Dementia Association.Co-Chair of World Federation of Neurology, Research/Aphasia research group“I felt that there is much ‘positive energy’ in dementia research around the world. Dementia research is very much a global effort, and many laboratories work in partnership both nationally and internationally, where expertise can be pooled and more progress can be made through collaborative efforts.”
The Ebbinghaus illusion or Titchener circles is an optical illusion of relative size perception. Named for its discoverer, the German psychologist Hermann Ebbinghaus (1850–1909), the illusion was popularized in the English-speaking world by Edward B. Titchener in a 1901 textbook of experimental psychology, hence its alternative name "Titchener circles”.In the best-known version of the illusion, two circles of identical size are placed near to each other, and one is surrounded by large circles while the other is surrounded by small circles. As a result of the juxtaposition of circles, the central circle surrounded by large circles appears smaller than the central circle surrounded by small circles.Contextual effects are present at every level, from basic perception to social interaction. This means that we do not perceive objects or process cognitive events in an abstract and universal way. The specific significance of an object, emotion, word, or social situation depends on the contextual effects. During normal cognition, our brains do not process targets and contexts separately; rather, targets are in context.
Something that is sadly very common in advanced dementia is the decline of the swallowing reflex. The condition, known as dysphagia, is extremely distressing for both the person affected and those caring for them, and can be fatal, either directly through choking or indirectly by setting up aspiration pneumonia.Developing a good understanding of these issues, combined with care that is personalised and dedicated to the individual, can help to minimise incidents of choking.If your loved one is in a care home, you are relying very heavily on staff being vigilant with adhering to the guidance, but also being confident enough to feed and give enough drinks to your relative and not just avoid doing this for fear of ‘getting it wrong’.“There is a huge drive in dementia care for a high calorie intake, and to this end many people living with dementia are advised to eat full-fat dairy products as often as possible.”Why experience mattersA recurrent theme in my talk.
You may need to be more aware of non-verbal messages, such as facial expressions and body language. You may have to use more physical contact, such as reassuring pats on the arm, or smile as well as speaking. Gerard Egan defined the acronym SOLER as part of his “Skilled Helper” staged approach to active listening.
Also Social Care Institute for ExcellenceChoice and control are key defining aspects of dignity.Withdrawal of respect inhibits choice and control. Treat people as equals, ensuring they remain in control of what happens to them.Empower people by making sure they have access to jargon-free information about services when they want or need it.Identify areas where people’s independence is being undermined in the service and look for ways to redress the balance.
“I became frustrated when trying to find information and resources about dementia when my mother was finally diagnosed with dementia four years ago. So many sites, so much stuff to read!”Lee is specifically mentioned by Anna Hepburn (2013), Digital Communications Manager for Social Care, in an article entitled ‘Digital engagement on dementia’ on the Department of Health website. “One of the #dementiachallengers, Lee (@dragonmisery) has set up the Dementia Challengers site to signpost online resources for people caring for someone with dementia. Nothing dem- onstrates better how the Dementia Challenge is more than a government initiative – and how it has its own digital life – than people who care about dementia creating their own digital community and helping others.”
Thank Jo for coming today.The term ‘family carer’ as used in this briefing implies a person or people identified by the person with dementia (if possible) as important to them, and is intended to cover a spouse, partner, child, other relative or friend and supporter.Care staff may find it difficult to raise the subject of end of life care, but training and support will help them become more confident.Making treatment decisions on behalf of another person places an emotional burden on family carers, but care staff can help by informing them about what is happening and what to expect. Good communication with staff is highly valued by family carers.
Tommy gave up an established career to become the sole carer for his mother in the five years she had dementia right up until her death in September 2012. While he was looking after his mum he began campaigning on behalf of dementia sufferers and their carers.
With support from The Alliance (Health and Social Care Alliance) undertook a marathon walk across Scotland in 2011, ‘Tommy on Tour’, attempting to raise awareness, inviting carers across the nation to contact him with their stories, and lobbying politicians and influential people. He made excellent use of a daily blog to publicise his tour and carers’ stories, which he intends to continue. He created and promoted a DVD – ‘It’s okay to ask for help.’
It was Tommy's dream to put on a concert with a specially invited audience of carers to thank them and celebrate the wonderful part they play in our society.The venue is the Glasgow Royal Concert Hall. It's all part of Celtic Connections.
Songstress Eddi Reader and indie folk five-piece Admiral Fallow were among the artists who took to the stage on Monday 20th January for a unique concert to celebrate the work of the 660,000 carers in Scotland and those who support them. Joining them on the bill for the ‘Letters, Life and Love Stories’ Concert organised by the ALLIANCE, Regular Music and Celtic Connections were Emma Pollock accompanied by the Cairn String Quartet, Horse McDonald, Hue & Cry, Kassidy, Tommy Reilly, Joe Nisbet Jr, Siobhan Wilson and Little Fire. The special concert, paying tribute to those who play a caring role was brought to an end in a fitting manner when all of the acts returned to the stage for a group performance of ‘Lean On Me.”Tommy is the Project Engagement Lead with the ALLIANCE’s Dementia Carer Voices Project, he speaks to carer groups, health and social care professionals and students as well as key decision-makers who have influence over the lives of people affected by dementia.
Most care for people with dementia is provided by family and friends -‘carers'. It is estimated that the UK has 670,000 primary carers of people with dementia, and these carers save the UK £8 billion a year
Five key aimsCarers of people with dementia:have recognition of their unique experience - 'given the character of the illness, people with dementia deserve and need special consideration... that meet their and their caregivers needs' (WorldAlzheimer Report 2013 Journey of Caring)are recognised as essential partners in care - valuing their knowledge and the support they provide to enable the person with dementia to live wellhave access to expertise in dementia care for personalised information, advice, support and co-ordination of care for the person with dementiahave assessments and support to identify the on-going and changing needs to maintain their own health and well-beinghave confidence that they are able to access good quality care, support and respite services that are flexible, culturally appropriate, timely and provided by skilled staff for both the carer and the person for whom they care
“Since 2007 I have been providing front line post diagnostic, psycho-social support to people living with dementia at home. In six and a half years I have accumulated more than 2,500+ individual home visits. This has provided me with a fascinating insight into the everyday lived experience of dementia within the context of the home and wider community.”“In April 2013 I set up my own dementia care blog. Remarkably after just eight months I beat a number of national media heavyweights including The Guardian, The Times, BBC1’s Panorama and Channel4’s Dispatches to be crowned winner of winners in the prestigious Older People in the Media Awards 2013 winning both ‘Best Factual New Media Content about Older People’s Issues’ and ‘Best Overall Contribution to the debate on Older People’s Issues’.”
The philosophy of this blog is ‘making dementia care personal’. It presumes that dementia care is just not personal enough, not for people living with dementia, their families or even front line professionals like me. Institutional barriers.Pervasive concern of my thesis.
Michael White, a fellow Director of “Sporting Memories” hit upon the idea of taking his vast image archive along, spreading the photos out on a table and working with smaller, focused groups.Recounting the positive impact this approach had at a conference, in 2009 the Scottish Football Reminiscence Project was born. A small joint project with Alzheimer Scotland and the Scottish Football Museum was established and evaluated. The evaluation by Glasgow Caledonian University in 2010 concluded that football reminiscence has the potential to contribute to the wellbeing of men with dementia in terms of enhancing their self- confidence, self-expression, sociability and sense of enjoyment.The benefits of offering football reminiscence to older men with dementia quickly became apparent. Here was an activity that re-captured not only the passion of supporting a team, but all that came with that. Images passed around not only invoked memories of the great players and teams, of matches won and lost, but also of routines and traditions within communities before and after games.
Our vision is to roll out the use of Sports Reminiscence across the UK and beyond, demonstrating its potential not only for improving the wellbeing of people with dementia but also for those who are experiencing or at risk of depression, social isolation or who have been recently bereaved or indeed been made redundant and are struggling with maintaining a role or identity within their community.
Dr Guzmán García, who now works at the Dementia Research Centre, North East London NHS Foundation Trust, said: “While dancing is often considered entertainment in care homes, I believe that it can be useful practice. I found that these dance classes helped calm agitation and improved mood and quality of life for people with dementia. There are also obvious advantages in terms of physical fitness.Residents were introduced to some simple steps allowing them to dance together to uplifting Danzón music. The lessons brought together cognitive, behavioural and emotional functions and also enabled residents to enjoy the music and the social interaction.“I witnessed the joy people got from taking part in the dancing and for residents who were watching, the laughter and happy memories it generated.”Gardening is a physical activity that provides an opportunity to get outdoors and is enjoyed by many people. The activity can be varied to suit the person's abilities - from general tidying to weeding, raking up leaves and watering the plants. There is also the satisfaction of watching the plants grow and enjoying their colours, smells and textures. Gardening can be an enjoyable activity for people at all stages of dementia. If the person does not have a garden, tending to indoor plants or flowers can be enjoyable as well.
The term 'assistive technology' refers to 'any device or system that allows an individual to perform a task that they would otherwise be unable to do, or increases the ease and safety with which the task can be performed' (Royal Commission on Long Term Care, 1999).
Professor Orpwood recently retired as Director of the Bath Institute of Medical Engineering (BIME) after a career in engineering design and research, initially in Industry, and then in academia and the health service. His work at BIME ranged from surgical devices to disability equipment, and in the later years had a strong focus on supporting people with dementia, ranging from simple memory aids to autonomous smart homes.Professor at University of BathHis original background however was in the neurosciences, and he has always maintained that interest through a modest programme applying engineering modelling tools to the behaviour of neural tissues. Professor Roger Orpwood (2009) has been instrumental in mapping out a new design methodology for assistive technologies in dementia. Orpwood (2009) highlights that the designer needs to make close observations about how the user has reacted, and in some cases make measurements of their responses. Having tested an initial prototype, Orpwood proposes that the design can then be amended to take into account any problems or concerns that arose, with the testing repeated. This is shown schematically in Figure 14.1.
Chapter 15.An ‘ambient assisted living’ (AAL) system is seen to have potential benefits for monitoring a range of alert situations – for example, critical events requiring immediate intervention (e.g. heart attack) to non-critical situations requiring longer-term preventive interventions (e.g. exacerbations of a chronic illness). How can one best respond to an individual’s desire to ‘age-in-place’? How can one improve services and enhance people’s independence and quality of life? How can one best respond to these challenges in the context of limited resources? It is in this context that advances in the area of AAL may play a crucial rôle. AAL services and technologies are designed to help extend the time that older people can live at home by ‘increasing their autonomy and assisting them in carrying out activities of daily life’ (Wojciechowski and Xiong, 2008).
COACH: the five essential steps of handwashing – successful activity completion was considered to be any sequence of steps that took the participant from start to finish; as the long-term care facility’s guidelines required the use of liquid soap, wetting one’s hands before getting the soap was not considered an essential step in the activity, therefore the ‘water on’ and ‘soap used’ steps are interchangeable (adapted from Mihailidis et al., 2008)
COACH: motion tracker– a flow diagram of COACH components–images from the camera are translated into hand and towel positions by the tracking system; these are passed to the belief monitor, which calculates the probability distribution over the possible states; this belief state is passed to the policy, which selects an action for COACH to take (i.e. prompt, observe user, or call caregiver) (adapted from Mihailidis et al., 2008)
The Telecare LIN is the national network supporting local service redesign through the application of telecare and telehealth to aid the delivery of housing, health, social care and support services for older and vulnerable people.
Dementia Dog, one of the five innovative solutions developed through the Living Well with Dementia Design Challenge, is a service providing assistance dogs to people with dementia, helping them lead more fulfilled, independent and stress-free lives.The dogs are taught to support existing patterns of waking, sleeping and eating for people with dementia. Through responding to sound alerts they can also help with regular hydration, medication and toilet use. In the early stages, reminders may not be necessary, but if they begin immediately it will mean the routine is established when the need arises. Dogs can also be trained to provide orientation outside the home.The social and emotional benefits are potentially huge. Dogs are naturally loving presences and extensive anecdotal evidence suggests they can have a transformative effect on people with dementia’s alertness and mood. Outside the home, dogs can be great ice-breakers, initiating conversations in which memory need not be a factor. Just by being able to get out more, the person with dementia can widen his or her circle of support.
The term built environment refers to the human-made surroundings that provide the setting for human activity, ranging in scale from buildings and parks or green space to neighbourhoods and cities that can often include their supporting infrastructure, such as water supply, or energy networksDementia-related problems often make it more difficult to understand and navigate the built environments. Dementia-friendly environments should compensate for impairments in order to maximise independence and quality of life
In light of our ageing population and rapid expansion of the oldest-old group (age >85) it is important that the urban environment is easily accessible. As part of ‘inclusive design’ policies, tactile ‘blister’ paving was designed to provide guidance for visually impaired and blind people at sites such as pedestrian crossings. However, a report by the UK Health & Safety Laboratory questioned whether tactile blister paving may lead to trips in older adults due to the height of the blisters. Tactile paving may be considered as man-made uneven ground, and it is known that walking on uneven ground is associated with falls.Participants with balance problems told them that they often felt unsafe walking on tactile paving and, in our laboratory, it affected the rhythm of our subjects’ gait, indicating that their balance was challenged. Many people found the ‘blisters’ uncomfortable and regarded them as a slip hazard when laid on a steep slope, or when wet or icy; when tested, we found that brass and steel studs had a high slip potential.
Supportive communities are well known in Japan. For example, Fureai kippu (in Japanese ふれあい切符 :Caring Relationship Tickets) is a Japanese currency created in 1995 by the Sawayaka Welfare Foundation so that people could earn credits helping seniors in their community.The basic unit of account is an hour of service to an elderly person. Sometimes seniors help each other and earn the credits, other times family members in other communities earn credits and transfer them to their parents who live elsewhere.In Japan, there’s a strong ethos and established history of ‘befriending’, and English policy has emulated that. Imitation is the best form of flattery, but not when it comes to intellectual property law.This is the Purple Angel symbol co-designed by Jane Moore from Camelford and Norman McNamara from Torbay.
Place – how do the physical environment, housing, neighbourhood and transport support people with dementia?People – how do carers, families, friends, neighbours, health and social care professionals (especially GPs) and the wider community respond to and support people with dementia?Resources – are there sufficient services and facilities for people with dementia and are these appropriate to their needs and supportive of their capabilities? How well can people use the ordinary resources of the community?Networks – do those who support people with dementia communicate, collaborate and plan together sufficiently well to provide the best support and to use people’s own ‘assets’ well?
Healthy Living Club StockwellThe group meets for 4 hours each week for a programme of activities developed to alleviate the symptoms of dementia and to promote the mental and physical wellbeing of those people with the illness. Each meeting is run as a social event, which people attend to meet each other, have a good time and share experiences. The Club is run with a team of volunteers and some sessional contributors, led by a paid co-ordinator. It is seen as a blue-print for future dementia care in the community.Local people with dementia and their carers have a social focus every week, often in place of isolation. The Club is self-governing and adapts to the changing needs of its members as their condition progresses.
Advocacy is, according to the Advocacy Charter: "…taking action to help people say what they want, secure their rights, represent their interests and obtain services they need. Advocates and advocacy schemes work in partnership with the people they support and take their side. Advocacy promotes social inclusion, equality and social justice”Advocacy schemes work in partnership with the people they support and take their side in a dispute. Advocacy can empower people who can feel very powerless indeed, especially when dealing with professionals and large powerful organisations.
Dementia Alliance International is a non-profit group of people with dementia from the USA, Canada, Australia and other countries that seek to represent, support, and educate others living with the disease, and an organization that will provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life.Their first major goal is to raise funds for attendance of people with dementia at the next Alzheimer’s Disease International conference in May 2014.