scholarly journals The extended palliative phase of dementia – An integrative literature review

Dementia ◽  
2016 ◽  
Vol 18 (1) ◽  
pp. 108-134 ◽  
Author(s):  
Elizabeth Hanson ◽  
Amanda Hellström ◽  
Åsa Sandvide ◽  
Graham A Jackson ◽  
Rhoda MacRae ◽  
...  
Keyword(s):  
Literature Review ◽  
End Of Life Care ◽  
Dementia Care ◽  
Educational Opportunities ◽  
Advanced Dementia ◽  
Subsequent Work ◽  
People With Dementia ◽  
Definition Of ◽  
Palliative Phase ◽  
Person With Dementia

This article presents an integrative literature review of the experience of dementia care associated with the extended palliative phase of dementia. The aim was to highlight how dementia is defined in the literature and describe what is known about the symptomatology and management of advanced dementia regarding the needs and preferences of the person with dementia and their family carer/s. There was no consistent definition of advanced dementia. The extended palliative phase was generally synonymous with end-of-life care. Advanced care planning is purported to enable professionals to work together with people with dementia and their families. A lack of understanding of palliative care among frontline practitioners was related to a dearth of educational opportunities in advanced dementia care. There are few robust concepts and theories that embrace living the best life possible during the later stages of dementia. These findings informed our subsequent work around the concept, ‘Dementia Palliare’.

The experience of providing end-of-life care to a relative with advanced dementia: An integrative literature review

2012 ◽  
Vol 11 (2) ◽  
pp. 155-168 ◽  
Author(s):  
Shelley C. Peacock
Keyword(s):  
Literature Review ◽  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Terminal Illness ◽  
Life Care ◽  
Advanced Dementia ◽  
Symptoms Of Depression ◽  
People With Dementia ◽  
End Stage

AbstractThe number of people with dementia is growing at an alarming rate. An abundance of research over the past two decades has examined the complex aspects of caring for a relative with dementia. However, far less research has been conducted specific to the experiences of family caregivers providing end-of-life care, which is perplexing, as dementia is a terminal illness. This article presents what is known and highlights the gaps in the literature relevant to the experiences of family caregivers of persons with dementia at the end of life. A thorough search of the Cumulative Index to Nursing and Allied Health Literature (CINAHL) and PubMed databases from 1960 to 2011 was conducted. Ten studies were identified that specifically addressed the experience of family caregivers providing end-of-life care to a relative with advanced dementia. Common themes of these studies included: 1) the experience of grief, 2) guilt and burden with decision making, 3) how symptoms of depression may or may not be resolved with death of the care receiver, 4) how caregivers respond to the end-stage of dementia, and 5) expressed needs of family caregivers. It is evident from this literature review that much remains to be done to conceptualize the experience of end-of-life caregiving in dementia.

scholarly journals Antibiotic Use at the End-of-Life in Patients with Advanced Dementia: A Systematic Literature Review

2020 ◽  
Vol 41 (S1) ◽  
pp. s120-s120
Author(s):  
Alexandre Marra ◽  
Mireia Puig-Asensio ◽  
Eli Perencevich
Keyword(s):  
Literature Review ◽  
Cohort Studies ◽  
End Of Life ◽  
Systematic Literature Review ◽  
End Of Life Care ◽  
Final Analysis ◽  
Antibiotic Use ◽  
Life Care ◽  
Advanced Dementia ◽  
Days Of Therapy

Background: Improving the use of antibiotics across the care continuum will be necessary as we strive to protect our patients from antimicrobial resistance. One potential target for antimicrobial stewardship is during end-of-life care of patients with advanced dementia. We aimed to perform a systematic literature review measuring the burden of antibiotic use during end-of-life care in patients with dementia. Methods: We searched PubMed, CINAHL, and Embase through July 2019 for studies with the following inclusion criteria in the initial analysis: (1) end-of-life patients (ie, dementia, cancer, organ failure, frailty or multi-morbidity); (2) antibiotic use in the end-of-life care; with the final analysis restricted to (3) patients with advanced dementia. Only randomized controlled trials (RCTs) and cohort studies were included. Results: Of the 93 full-text articles, 17 studies (18.3%) met the selection criteria for further analysis. Most of the included studies were retrospective (n = 8) or prospective (n = 8) cohort studies. These studies in combination included 2,501 patients with advanced dementia. Also, 5 studies (698 patients, [27.9%]) were restricted to patients with Alzheimer’s disease. In 5 studies in which data were available, fewer than one-quarter of patients (19.9%, 498) with advanced dementia were referred to palliative care. In 12 studies >50% of patients received antibiotics during the end-of-life period. Also, 15 studies did not report the duration of antimicrobial therapy. Only 2 studies reported the antimicrobial consumption in days of therapy per 1,000 resident days. Only 6 studies studied whether the use of antibiotics was associated with beneficial outcomes (survival or comfort), and none of them evaluated potential adverse effects associated with antibiotic use. Conclusions: There are significant gaps in the literature surrounding antimicrobial use at the end of life in patients with advanced dementia. Future studies are needed to evaluate the benefits and harms of using antibiotics for patients during end-of-life care in this patient population.Acknowledgement. We thank Jennifer Deberg from Hardin Library for the Health Sciences, University of Iowa Libraries on the search methods.Disclosures: NoneFunding: None

Management of dementia

2013 ◽  
Author(s):  
Sarah Cullum
Keyword(s):  
End Of Life Care ◽  
Psychological Symptoms ◽  
Life Care ◽  
Environmental Aspects ◽  
Limited Ability ◽  
People With Dementia ◽  
Early Dementia ◽  
Person With Dementia ◽  
Do So

The management of dementia discusses the needs of people in both the early and later stages of dementia, focusing on social and environmental aspects as well as physical and psychological. The main management tasks in early dementia are helping the person with dementia and their family come to terms with the diagnosis, optimising quality of life in the present, and planning for the future. In later dementia we deal with maintaining person-hood, the emergence of behavioural and psychological symptoms of dementia, making decisions for a person who no longer has capacity to do so for themselves, and end of life care in people who are increasingly frail and have limited ability to communicate their needs. Underpinning all of these is the need for respect and communication, and to provide person-centred and relationship-centred care for people with dementia and their carers.

scholarly journals Technology-Driven Solutions to Prompt Conversation, Aid Communication and Support Interaction for People With Dementia and Their Caregivers: A Systematic Literature Review

2020 ◽  
Author(s):  
Viktoria Hoel ◽  
Carine Mendom Feunou ◽  
Karin Wolf-Ostermann
Keyword(s):  
Literature Review ◽  
Social Interactions ◽  
Third Party ◽  
Small Scale ◽  
People With Dementia ◽  
Conversation Partner ◽  
Person With Dementia ◽  
The Impact ◽  
The Relationship

Abstract Background The impact of dementia on communication capabilities can result in difficulties in social interactions and between people with dementia and their conversation partner, as initiating and maintaining conversations becomes increasingly challenging. The role of technology in promoting social health and participation for people with dementia is increasing, but the usage on technological devices as a third party in social interactions to enhance communication quality is still in its infancy. The objective of this literature review is to provide a comprehensive description of technology-driven interventions for people with dementia and their conversation partners to enhance communication and facilitate positive social interactions. Methods A systematic search was conducted using PubMed, CINAHL and PsycINFO, where titles and abstracts were screened by two researchers independently. The reference lists of initially identified papers were hand-searched for further relevant studies. Quality appraisal of the included studies was assessed using the Mixed Methods Appraisal Tool.Results Twenty-six papers were included., where the most common technologies to facilitate communication and interactions were tablet-computers (n=11), social robots (n=7) and PCs (n=4). By analyzing the impacts of the device(s) on social interaction and communication, five major themes emerged: i) increased interaction; ii) better understanding of the person with dementia; iii) improved conversational quality; iv) reducing pressure on the conversation partner; and v) a conversational platform.Conclusion While the majority of the included studies are small-scale, they indicate promising findings on the potential of technology in helping dyads to interact in a way that relieves strain on the caregiver, enhances the relationship and engages people with dementia in social activities. Rigorous investigation using standard, comparable measurements is needed to demonstrate the effects of technological solutions, taking on the perspective on caregiving dyads as an entity rather than looking at outcomes for one member of the dyad in isolation.

Ethical aspects in dementia care - The use of psychosocial interventions

2020 ◽  
pp. 096973302095212
Author(s):  
Benedicte Sørensen Strøm ◽  
Knut Engedal
Keyword(s):  
Psychosocial Interventions ◽  
Well Being ◽  
Dementia Care ◽  
Ethical Challenge ◽  
Ethical Aspects ◽  
Respect For Autonomy ◽  
Daily Care ◽  
People With Dementia ◽  
Clinical Practise ◽  
Person With Dementia

The use of psychosocial interventions for people with dementia is common and recommended because they focus on the underlying problem and well-being of the person. The promotion of well-being is a relevant dimension in person-centred care, where the aim is to confirm the person’s ‘personhood’. Most literature about ethics in dementia care instructs us on how and when to include people with dementia in our research. Little is written about the ethical aspects regarding the use of psychosocial interventions in daily care. In clinical practise, several challenges arise about the use of psychosocial interventions. Those include questions about the person’s ability to participate in decision-making and how we know what is best for them. Furthermore, we must consider what kinds of psychosocial interventions are best for everybody, or if intervention causes discomfort for the person. This article emphasizes the necessity to consider the ethical aspects of the implementation of psychosocial interventions while taking into consideration the persons individual needs. A particular ethical challenge arises when a person with dementia is unable to express themselves verbally. Therefore, it is essential that the staff know the history and preferences of each person with dementia. The ethical aspects of psychosocial interventions for people with dementia will be discussed using Beauchamp and Childress four ethical principles: respect for autonomy, beneficence, non-maleficence and justice. The person-centred approach proposed by Kitwood’s and Brooker.

scholarly journals Literature review: technological interventions and their impact on quality of life for people living with dementia

2020 ◽  
Vol 27 (1) ◽  
pp. e100064
Author(s):  
David Sanders ◽  
Philip Scott
Keyword(s):  
Quality Of Life ◽  
Well Being ◽  
Dementia Care ◽  
Assistive Technologies ◽  
Healthcare Sector ◽  
Supporting Evidence ◽  
Technological Advancement ◽  
People With Dementia ◽  
Person With Dementia

ObjectivesRapid technology-driven innovation in the healthcare sector has led to an increasing ability to effectively respond to health challenges. However, the cognitive challenges faced by a person with dementia exacerbate the difficulty of designing enduring technological dementia care solutions. Despite this, and in the absence of a cure, facilitating well-being and improved quality of life becomes pivotal for those living with dementia and their caregivers. This review aimed to identify and consolidate the provision of technological solutions for dementia care, and how these are perceived to impact the quality of life of a person with dementia.MethodsArticles and journals were identified using keywords including those relating to quality of life, assistive technologies and technology adoption and acceptance. Greater priority was given to resources published after 2010 due to the speed of technological advancement, and peer-reviewed articles were preferred.Results91 resources were identified, with 38 contributing to the final review. In addition to multiple quality of life measurement tools, the literature identified a large variety of solutions that fell into three categories: those used ‘by’, ‘with’ or ‘on’ a person with dementia.ConclusionsThis review concludes that the ‘one size fits all’ approach to many solutions reflects the lack of supporting evidence, negatively impacting trust in their usefulness among caregivers and their subsequent adoption rates. This could be attributed to limited involvement of people with dementia in studies of effectiveness and adoption. Additional research is recommended to further consolidate research on quality of life and to understand the individuality and progression of dementia and its influence on dementia care solutions.

scholarly journals 305 - What happens before, during and after crisis for someone with dementia living at home

2020 ◽  
Vol 32 (S1) ◽  
pp. 62-63
Author(s):  
Sabarigirivasan Muthukrishnan ◽  
Jane Hopkinson ◽  
Kate Hydon ◽  
Lucy Young ◽  
Cristie Howells
Keyword(s):  
Hospital Admission ◽  
Social Care ◽  
Dementia Care ◽  
Home Treatment ◽  
List Type ◽  
Crisis Resolution ◽  
People With Dementia ◽  
Health And Social Care ◽  
Person With Dementia ◽  
At Home

Background:Best practice in dementia care is support in the home. Yet, crisis is common and can result in hospital admission. Home-treatment of crisis is an alternative to hospital admission that can have better outcomes and is the preference of people living with dementia.Purpose:To report an investigation of the management of crisis for people with dementia living at home and managed by a Home Treatment Crisis Team.Objective:To identify critical factors for successful resolution of crisis and avoidance of hospital admissionMethods:The research was mixed-methods case study design. It was an in depth investigation of what happens during crisis in people with dementia and how it is managed by a home treatment crisis team to resolution and outcome at six weeks and six months. Methods were observation of the management of crisis in the home setting for 15 people with dementia (max 3 per person, total 41 observations), interviews with people with dementia (n=5), carers (n=13), and 14 professionals (range 1 to 6 per person, total 29), a focus group with professionals (n=9) and extraction from medical records of demographics and medical history.The analysis focused on the identification of key treatments, behaviours, education and context important for home treatment to prevent hospital admission.Findings:The study recruited 15 of the 88 accepted referrals to the service for management of a crisis in a person with dementia.Factors key for crisis resolution were a systems approach with embedded respect for personhood,attention to carer needs independently of the person with dementia,review and monitoring of the effect of medications,awareness and promotion of potential benefits with treatment at home,education of the health and social care workforce in dementia care, local availability of respite and other social care services.The Home Treatment Crisis Team created a ‘Safe Dementia Space’ for the person with dementia in crisis. In the first instance, this was immediate but temporary with on-going assessment and intervention until negotiated permanent support was in place coproduced and agreed by stakeholders to be a sustainable dementia space with acceptable risk of harm to the person with dementia or others. The approach enabled avoidance of hospital admission in more than 80% of referrals.Conclusion:This is the first study to collect data during crisis at home for people with dementia and to investigate process and management. It reveals the Home Treatment Crisis Team created sustainable ‘Safe Dementia Space’ to enable the person with dementia to continue to live in the community during and after crisis, thus avoiding hospital admission. The identified key components of the management approach for crisis resolution are important considerations in the design and delivery of home treatment services for people with dementia in the UK and beyond.

Advance care planning and people with dementia

2018 ◽  
Author(s):  
Karen Harrison Dening
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Diagnostic Process ◽  
Clear Understanding ◽  
Care Planning ◽  
Life Care ◽  
People With Dementia ◽  
Advance Care ◽  
Person With Dementia

Advance care planning (ACP) is widely recognised as a process to enable an individual’s preferences and wishes for palliative and end-of-life care to be recognized at a time when they no longer have the capacity to make such ‘real time’ and autonomous decisions. In dementia, it is essential that ACP be offered early in the diagnostic process and supported when the person still has the ability to do so. Often decisions about end-of-life care for a person with dementia are made in the later stages of the illness, at a point of transition or crisis and with the absence of a clear understanding of their wishes. Clinicians may then turn to family members in the assumption that they know what these would be, however, this is often not the case which can add undue pressure to families in distressing circumstances.

A new model of care for patients with dementia: the Japanese initiative for dementia care

2017 ◽  
pp. 1027-1032
Author(s):  
Yohko Maki ◽  
Takashi Sakurai ◽  
Kenji Toba
Keyword(s):  
Long Term Care ◽  
Dementia Care ◽  
Community Members ◽  
Term Care ◽  
Ageing Society ◽  
People With Dementia ◽  
The World ◽  
Long Term Care Insurance ◽  
Person With Dementia

Facing the unprecedented ageing society, Japan’s contribution to the world should be to lead worldwide discussion on dementia care. This chapter introduces the Japanese initiatives for dementia care. For realization of a society where people with dementia live well, the new concept of ‘prosocial relationship-based care’ for dementia has been introduced as the ethical background; community members are expected to reach out helping hands to each person with dementia to restore their participation in society. Based on this basic concept and the long-term care insurance system, various measures related to primary, secondary and tertiary preventive approaches for dementia have been promoted to achieve appropriate and seamless coordination of medical and long-term care. To establish prosocial relationships, it is critical to promote cooperation among various stakeholders, and develop community networks and social resources.

scholarly journals Photo-Elicited Conversations about Therapy Dogs as a Tool for Engagement and Communication in Dementia Care: A Case Study

Animals ◽  
2019 ◽  
Vol 9 (10) ◽  
pp. 820
Author(s):  
Lena Nordgren ◽  
Margareta Asp
Keyword(s):  
Sense Of Self ◽  
Dementia Care ◽  
Inner Life ◽  
Therapy Dog ◽  
Video Recordings ◽  
People With Dementia ◽  
Video Observations ◽  
Person With Dementia

Understanding the inner life of people with dementia can be challenging and there is a need for new and different approaches. Previous research shows that people with dementia can experience emotions such as harmony, closeness, and joy as well as sadness and concern when interacting with a therapy dog. Simultaneously, memories of past episodes are brought back to life when the person interacts with the dog. This raises questions about whether photos of interaction with a dog can evoke memories or support people with dementia in communicating emotions in a corresponding way. The aim of this study was to explore photo-elicited conversations as a tool for engagement and communication in dementia care. Repeated video observations of photo-elicited conversations between a woman with dementia and a dog handler/assistant nurse were used to collect data. The video recordings were analyzed with a phenomenological hermeneutical method. The role of photo-elicited conversations as a tool for engagement and communication in dementia care is that the conversations can help the person with dementia to feel a sense of being situated and recall feelings of liveliness and belongingness, and thus supporting the person’s sense of self. The results can be used to deepen nursing staff’s understanding of using photo-elicited conversations in dementia care.

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