Subjective needs of people with dementia: a review of the literature

2007 ◽  
Vol 19 (3) ◽  
pp. 559-592 ◽  
Author(s):  
Henriëtte G. van der Roest ◽  
Franka J. M. Meiland ◽  
Raffaella Maroccini ◽  
Hannie C. Comijs ◽  
Cees Jonker ◽  
...  
Keyword(s):  
Reference Lists ◽  
Well Being ◽  
Care Needs ◽  
People With Dementia ◽  
Individual Care ◽  
To Come ◽  
The Individual ◽  
And Coping ◽  
Insight Into

Objective: Insight into the individual care needs of the growing number of people with dementia is necessary to deliver more customized care. Our study aims to provide an overview of the literature on the subjective needs of people with dementia.Method: Electronic databases were searched for publications on subjective needs between January 1985 and July 2005, and reference lists were cross-referenced. Extracts of needs were classified within problem areas of the (Dutch) National Dementia Program and quality of life domains, and the extracts were classified as a “need” (an implicitly communicated felt state of deprivation), “want” (expression of a need) or “demand” (suitable solution to fulfill a need).Results: Subjective needs were found in 34 studies with various research aims, such as awareness and coping. Few studies aimed to measure needs of people with dementia. The most frequently reported needs of people with dementia were the need to be accepted and respected as they are, the need to find adequate strategies to cope with disabilities, and the need to come to terms with their situation. Explicit wants or demands were reported less frequently than needs.Conclusion: The high number of reported needs and the limited number of wants and demands show that people with dementia do not frequently mention how they want their needs to be met. Most reported needs are not instrumental, but are related to well-being and coping. Further research to inventory these needs could help achieve more demand-directed and better attuned care in the future.

scholarly journals Development of a Remote Assessment and Dynamic Response Intervention for Dementia-Related Care Needs

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 626-626
Author(s):  
Lyndsey Miller ◽  
Christina Reynolds ◽  
Carol Whitlatch ◽  
Joel Steele ◽  
Jeffrey Kaye
Keyword(s):  
Needs Assessment ◽  
Well Being ◽  
Behavioral Data ◽  
Sleep Habits ◽  
Care Needs ◽  
Assessment Protocol ◽  
Age In Place ◽  
Individual Care ◽  
Remote Assessment ◽  
The Individual

Abstract Unmet dementia-related care needs are highly prevalent, and are detrimental to the care dyad’s health and well-being, safety, and ability to age in place. The goal of this study was to develop an ecologically-valid needs assessment and integrate it with aspects of the SHARE intervention to inform values-based care planning. Using digital behavioral data collected via an actigraphy watch and multimodal sensors installed in the homes of 76 older adult couples with and without dementia, we created a prototype of the objective measures informing READyR: time spent together or separate as a dyad, exits from the home, sleep habits, physical activity, daily weight, driving habits, and medication taking behavior. These digital behavioral data were then mapped onto care values (e.g. safety, avoiding burden & autonomy) to create a values-based needs assessment protocol that is tailored to the individual care dyad. Discussion will focus on future testing and applications of READyR.

scholarly journals Equality for Prospective People: A Novel Statement and Defence

Utilitas ◽  
2021 ◽  
pp. 1-17
Author(s):  
Alex Voorhoeve
Keyword(s):  
Well Being ◽  
Separateness Of Persons ◽  
To Come ◽  
The Individual ◽  
Rival View ◽  
Equal Concern

Abstract A possible person's conditional expected well-being is what the quality of their prospects would be if they were to come into existence. This article examines the role that this form of expected well-being should play in distributing benefits among prospective people and in deciding whom to bring into existence. It argues for a novel egalitarian view on which it is important to ensure equality in people's life prospects, not merely between actual individuals, but also between all individuals who, given our choices, have a chance of coming into existence. The article argues that such egalitarianism for prospective people springs from equal concern for each prospective person and has plausible implications. It further shows that it has a rationale in respect for both the unity of the individual and the separateness of persons. Finally, it defends this view against a key objection and shows it is superior to a rival view.

Perceived Overprotection and Its Association With Quality of Life in Dementia

GeroPsych ◽  
2019 ◽  
Vol 32 (3) ◽  
pp. 125-134
Author(s):  
Mechthild Niemann-Mirmehdi ◽  
Andreas Häusler ◽  
Paul Gellert ◽  
Johanna Nordheim
Keyword(s):  
Quality Of Life ◽  
Patient Autonomy ◽  
Positive Association ◽  
Well Being ◽  
Negative Association ◽  
Significant Positive Association ◽  
Cross Sectional ◽  
People With Dementia ◽  
Mental Well Being

Abstract. To date, few studies have focused on perceived overprotection from the perspective of people with dementia (PwD). In the present examination, the association of perceived overprotection in PwD is examined as an autonomy-restricting factor and thus negative for their mental well-being. Cross-sectional data from the prospective DYADEM study of 82 patient/partner dyads (mean age = 74.26) were used to investigate the association between overprotection, perceived stress, depression, and quality of life (QoL). The analyses show that an overprotective contact style with PwD has a significant positive association with stress and depression, and has a negative association with QoL. The results emphasize the importance of avoiding an overprotective care style and supporting patient autonomy.

scholarly journals System models for resilience in gerontology: application to the COVID-19 pandemic

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Katarzyna Klasa ◽  
Stephanie Galaitsi ◽  
Andrew Wister ◽  
Igor Linkov
Keyword(s):  
The Elderly ◽  
System Level ◽  
Improve Quality ◽  
Care Needs ◽  
Individual Level ◽  
Chronic Stressors ◽  
The World ◽  
Aging Adults ◽  
The Individual

AbstractThe care needs for aging adults are increasing burdens on health systems around the world. Efforts minimizing risk to improve quality of life and aging have proven moderately successful, but acute shocks and chronic stressors to an individual’s systemic physical and cognitive functions may accelerate their inevitable degradations. A framework for resilience to the challenges associated with aging is required to complement on-going risk reduction policies, programs and interventions. Studies measuring resilience among the elderly at the individual level have not produced a standard methodology. Moreover, resilience measurements need to incorporate external structural and system-level factors that determine the resources that adults can access while recovering from aging-related adversities. We use the National Academies of Science conceptualization of resilience for natural disasters to frame resilience for aging adults. This enables development of a generalized theory of resilience for different individual and structural contexts and populations, including a specific application to the COVID-19 pandemic.

scholarly journals Comparative Study of Burnout in Professional Caregivers of Institutionalized Elderly with Dementia and other Diseases

2011 ◽  
Vol 1 (2) ◽  
pp. 61-70
Author(s):  
Inmaculada Méndez ◽  
Esther Secanilla ◽  
Juan P. Martínez ◽  
Josefa Navarro
Keyword(s):  
Quality Of Life ◽  
Ad Hoc ◽  
Maslach Burnout Inventory ◽  
Well Being ◽  
Measuring Instruments ◽  
Global Approach ◽  
People With Dementia ◽  
Quality Of Patient Care ◽  
Psychoeducational Programs

In a global approach about the need of paying attention to staff working with and for older people with dementia and other diseases in residential care, it is necessary to investigate their emotional well-being to provide strategies to improve their quality of life and therefore their quality of patient care. Professional caregivers of people with dementia and other diseases have specific psycho-sociological problems. They are more prone to stress which can sometimes lead to the “burnout” due to specific functions in the workplace. To define the sample was decided to compare two residential centers of two regions, Murcia and Barcelona. We proceeded to the administration of the following measuring instruments: the scale Maslach Burnout Inventory (MBI) and an ad hoc survey conducted for professional caregivers. Finally, the results offer the possibility of carrying out programs to prevent emotional exhaustion in professional carers, as well as the possibility of designing psychoeducational programs for staff care and even future proactive and reactive interventions.

scholarly journals Understanding the Link between Family Caregiver Quality of Life and the Care Provided to Older People With Dementia

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 153-154
Author(s):  
Afeez Hazzan
Keyword(s):  
Quality Of Life ◽  
Quality Of Care ◽  
Older People ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Well Being ◽  
The United States ◽  
People With Dementia ◽  
The Impact

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

scholarly journals 104 - Awareness of Dementia and Coping to Preserve Quality of Life: A Five-Year Longitudinal Narrative Study

2020 ◽  
Vol 32 (S1) ◽  
pp. 8-8
Author(s):  
K. Thorsen ◽  
M. C. N. Dourado ◽  
A. Johannessen
Keyword(s):  
Quality Of Life ◽  
Coping Styles ◽  
Adaptive Function ◽  
Narrative Study ◽  
People With Dementia ◽  
The Moment ◽  
And Coping ◽  
Scientific Fields ◽  
Multidimensional Concept

AbstractBackground:Awareness of dementia is examined in different scientific fields as significant for assessment of diagnosis, and for treatment and adaptation to the disease. There are very few longitudinal studies of individual experiences of awareness among people with dementia, related to quality of life.Aim:To examine how younger people (< 65 years) with dementia (YOD) express awareness of the dementia and how, over time, they seem to handle awareness as a strategy to preserve quality of life.Method:A longitudinal qualitative study with individuals with YOD was performed with interviews every six months over five years for a maximum of ten interviews. The interviews were analysed by modified grounded theory.Findings:Awareness is a complex, multidimensional concept. Awareness of dementia is predisposed by personality, life history and established coping styles. The main coping styles – live in the moment, ignore the dementia, and make the best of it – seem to be rather consistent throughout the progression of the disease. Transitions in life situation, such as moving to a nursing home, may change the individual’s awareness of dementia.Conclusion:Unawareness of dementia may have an important adaptive function to preserve quality of life. To increase awareness must be approached with reflexivity and the utmost sensitivity.

Developing dementia: The existential experience of the quality of life with young-onset dementia – A longitudinal case study

Dementia ◽  
2018 ◽  
Vol 19 (3) ◽  
pp. 878-893 ◽  
Author(s):  
Kirsten Thorsen ◽  
Marcia Cristina Nascimento Dourado ◽  
Aud Johannessen
Keyword(s):  
Quality Of Life ◽  
Well Being ◽  
Single Individual ◽  
Longitudinal Case Study ◽  
Young Onset ◽  
People With Dementia ◽  
Treatment Support ◽  
Young Onset Dementia

BackgroundCognition and the ability to take care of daily activities and oneself gradually declines among people with dementia. Studies are scarce, especially regarding how people with young-onset dementia (YOD) (<65 years) experience the quality of their lives with the progression of dementia. People with dementia living alone face special challenges.AimTo examine the experience of the quality of life with YOD as a single person.MethodThe study presents a longitudinal case study with in-depth interviews exploring the experiences of a person with YOD. Individual interviews were conducted seven times over a period of three years from 2014 to 2017.FindingsWe examined if and how seven themes concerning the quality of life and well-being were fruitful for understanding the experiences of dementia in the everyday life of a single individual. The study explored needs and challenges during the development of dementia, and how the person reacted over time, set in context. The themes significant for well-being are: identity, connectedness, security, autonomy, meaning, growth and joy.ConclusionThe study shows how treatment, support, and services must be individualized when dementia develops in order to support identity, resources and mastering capacity, and promote well-being.

Detecting and Managing the Untreated Pain in Dementia

2020 ◽  
pp. 342-356
Author(s):  
Anne Corbett
Keyword(s):  
Pain Management ◽  
Current Evidence ◽  
Public Health Issue ◽  
Care Needs ◽  
People With Dementia ◽  
Dementia Syndrome ◽  
Assessment And Treatment ◽  
Person Centered Approach ◽  
Established Treatment

Dementia affects more than 30 million people worldwide and is a major public health issue because of the complex treatment and care needs of these older patients. Pain is very common in people with dementia and is closely linked to key clinical outcomes, including mobility and falls, behavioral symptoms, mental health, and quality of life. Effective pain management is therefore essential to provide a good quality of care for these individuals. Pain assessment and treatment can be challenging in dementia because of loss of communication and insight as the condition progresses. There are also indications that the dementia syndrome itself affects the experience of pain and response to established treatment approaches. Guiding principles for pain management are therefore focused on a person-centered approach, with careful monitoring to avoid the risk for polypharmacy and treatment sensitivity that is common in people with dementia. This chapter outlines the current evidence pertaining to pain in people with dementia and sets out recommendations for both assessment and treatment of pain in this patient group.

Assistive Technologies and the Carers of People with Dementia

2016 ◽  
Vol 5 (1) ◽  
pp. 45-59
Author(s):  
Sarmishtha Bhattacharyya ◽  
Susan Mary Benbow
Keyword(s):  
Quality Of Life ◽  
Well Being ◽  
Assistive Technologies ◽  
Narrative Review ◽  
People With Dementia ◽  
Technological Interventions ◽  
Informal Carers

Assistive technologies have a role in supporting both formal and informal carers of people with dementia, and in maintaining the independence, and quality of life of both people with dementia and their carers. The authors report a narrative review of the use of technological interventions to empower the carers of people with dementia, and relate this to a model of ageing well. They argue that this highlights the importance of empowering and connecting with carers in order to increase their participation and connection in the care of their relative/client; and conclude that both empowerment and connection contribute to maintaining autonomy and well-being of both carers and people with dementia. Technological interventions should not be used as alternatives to connection. The emphasis in practice should be on empowering and connecting with both carers and people with dementia.

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