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Commentary to: "Timely dying in dementia: Use patients' judgments and broaden the concept of suffering." Timely dying, suffering in dementia, and a role for family and professional caregivers in preventing it.

ABSTRACT: Broadening the concept of suffering in dementia to five types of suffering including suffering of family caregivers as proposed by Terman et al., may help raise awareness on a need to relieve suffering when living with dementia and adopt a holistic approach. However, as objective criteria in advance care plans for severe enough suffering to stop assisted feeding or other life-sustaining treatment in people with advanced dementia, these still need interpretation in the context of, for example, available treatment, and change in coping. New is the proposal to broaden severe enough suffering to suffering of family, including "bi-directional empathic suffering." We believe this creates new dilemmas regarding responsibility and may increase feelings of guilt. Quantifying suffering by adding up moderate suffering could further complicate matters. Therefore, we argue that a health care professional should guide the process and assume responsibility over current decisions to follow a person's previous wishes.

SUBMITTER: van der Steen JT

PROVIDER: S-EPMC10941495 | biostudies-literature | 2024 Jan-Mar

REPOSITORIES: biostudies-literature

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Commentary to: "Timely dying in dementia: Use patients' judgments and broaden the concept of suffering." Timely dying, suffering in dementia, and a role for family and professional caregivers in preventing it.

van der Steen Jenny T JT Scheeres-Feitsma Trijntje M TM Schaafsma Petruschka P

Alzheimer's & dementia (Amsterdam, Netherlands) 20240101 1

Broadening the concept of suffering in dementia to five types of suffering including suffering of family caregivers as proposed by Terman et al., may help raise awareness on a need to relieve suffering when living with dementia and adopt a holistic approach. However, as objective criteria in advance care plans for severe enough suffering to stop assisted feeding or other life-sustaining treatment in people with advanced dementia, these still need interpretation in the context of, for example, av ...[more]

PMID: 38496722

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Project description:BackgroundIn Colombia, cancer incidence is increasing, as is the demand for end-of-life care. Understanding how patients who die from cancer experience this phase will allow the identification of factors associated with greater suffering and actions to improve end-of-life care. We aimed to explore associations between the level of suffering of patients who died from cancer and were cared for in three Colombian hospitals with patient, tumor, treatment, and care characteristics and provided information.MethodsData on the last week of life and level of suffering were collected through proxies: Bereaved caregivers of patients who died from cancer in three participating Colombian hospitals. Bereaved caregivers participated in a phone interview and answered a series of questions regarding the last week of the patient's life. An ordinal logistic regression model explored the relationship between the level of suffering reported by bereaved caregivers with the patient's demographic and clinical characteristics, the bereaved caregivers, and the care received. Multivariate analyses were adjusted for place of death, treatments to prolong of life, prolongation of life during the dying process, suffering due to prolongation of life, type of cancer, age, if patient had partner, rural/urban residence of patient, importance of religion for the caregiver, caregivers´ relationship with the patient, and co-living with the patient.ResultsA total of 174 interviews were included. Median age of the deceased patients was 64 years (IQR 52-72 years), and 93 patients were women (53.4%). Most caregivers had rated the level of suffering of their relative as "moderately to extremely" (n = 139, 80%). In multivariate analyses, factors associated with a higher level of suffering were: unclear information about the treatment and the process before death Odds Ratio (OR) 2.26 (90% CI 1.21-4.19), outpatient palliative care versus home care OR 3.05 (90% CI 1.05-8.88), procedures inconsistent with the patient's wishes OR 2.92 (90% CI 1.28-6.70), and a younger age (18-44 years) at death versus the oldest age group (75-93 years) OR 3.80 (90% CI 1.33-10.84, p = 0.04).ConclusionEnd-of-life care for cancer patients should be aligned as much as possible with patients´ wishes, needs, and capacities. A better dialogue between doctors, family members, and patients is necessary to achieve this.

Project description:IntroductionUnderrepresented groups experience health disparities and a history of exploitation by researchers and the health-care system that may contribute to distrust of new treatments and technologies. This study aims to understand how diverse family caregivers and health-care professionals view the benefits and risks of precision medicine as well as cultural dimensions to consider when developing and implementing precision medicine interventions in dementia care.MethodsEight focus group sessions and one individual interview were conducted over a 6-month period. Fifty-four focus group participants included African-American, American Indian, rural Caucasian, Latino, and West African caregivers and health professionals. The majority of participants were female (73%) and were of Hispanic/Latino ethnicity (68%). About a third of participants identified their race as white. Participants were presented with four hypothetical scenarios related to precision medicine diagnostic and treatment approaches in dementia care: (1) genetic testing for dementia risk, (2) health-care informatics to determine individualized medication dosages based on health and family history, (3) a smartphone application providing dementia caregiving tips, and (4) remote activity monitoring technology in the home. Focus groups' responses were coded using thematic analysis.ResultsParticipants indicated skepticism regarding the use of precision medicine in their communities. Concerns included cost of precision medicine and insurance coverage; lack of alignment with cultural norms; fraught relationships between communities, health professionals, and researchers; data ownership and privacy; and the trade-off between knowing risk and treatment benefit.DiscussionEstablishing relationships with underserved communities is crucial to advancing precision medicine in dementia care. Appropriate engagement with diverse racial, ethnic, and geographic communities may require significant investment but is necessary to deliver precision medicine effectively.

Project description:BackgroundThis paper describes both the use of and needs for informal caregivers of people with dementia, based on a questionnaire survey organized within the National Dementia Programme in the Netherlands. The National Dementia Programme is a quality collaborative of the Dutch Alzheimer's Association, the Institute of Quality of Healthcare (CBO) and the Knowledge Centre on Ageing (Vilans), instigated by the Ministry of Health, Welfare and Sport, to improve integrated care for people with dementia and their informal caregivers. The support needs of informal caregivers are important to improve caregiver well-being and delaying institutionalization of the person with dementia.MethodsIn the period April 2006 - January 2007, the National Dementia Programme questionnaire was completed by 984 informal caregivers. Descriptive statistics were used to analyze the use of and needs for additional professional support by informal caregivers. Chi-square tests were used to assess the relationships between characteristics of the caregivers (spouses, sons/daughters, sons/daughters in-law) and support needs on one hand and to assess the relationship between the living situation of the person with dementia (living at home or living in a nursing home or home for the elderly) and support needs on the other hand.ResultsAlmost all informal caregivers (92.6%) received some professional support. However, two thirds (67.4%) indicated they had one or more needs for additional professional support. Informal caregivers often need additional professional advice about what to do when their relative is frightened, angry of confused. Spouses reported different needs than sons or daughters (in-law): spouses relatively often need emotional support and sons or daughters (in-law) more often need information and coordination of dementia care.ConclusionsMost of the informal caregivers report that they need additional information and advice, e.g. about how to cope with behavioral problems of their relative, about the progression of the illness trajectory, emotional support and coordination of dementia care. Future support programmes, e.g. in the field of case management, should address the specific needs of informal caregivers.

Project description:BACKGROUND:People with dementia often require full-time caregivers especially in the later stages of their condition. People with dementia and caregivers' access to reliable information on dementia is essential as it may have an important impact on patient care and quality of life. This study aims to provide an overview of the information needs and information seeking behaviour of people with dementia and their non-professional caregivers. METHODS:We conducted a scoping review of the literature and searched four electronic databases for eligible studies published up to August 2018. Two reviewers independently screened studies and extracted data. Information needs were classified according to emerging themes in the literature, and information seeking behaviour was categorized using Wilson's model of information behaviour. RESULTS:Twenty studies with a total of 4140 participants, were included in this review. Reported information needs focused on: (i) disease; (ii) patient care provision; (iii) healthcare services; and (iv) caregiver self-care. The most commonly reported information need was on healthcare service-related information. Characteristics found to influence information needs were the severity of dementia as well as patient and caregiver status. People with dementia and non-professional caregivers mainly displayed active searching, information seeking behaviour and preferred using electronic sources to obtain health information. CONCLUSION:Current dementia information sources available in English are extensive in the information they offer, but more emphasis needs to be placed on healthcare service-related information. All studies originated from high income countries and focused on information needs of non-professional caregivers only. The only variables found to be associated to information needs were severity of dementia condition as well as patient/caregiver status. The information needs identified in this review can be used to inform development and design of future dementia resources for people with dementia and their non-professional caregivers.

Project description:BackgroundPeople with dementia living in nursing homes are mostly sedentary, which is a consequence of various personal, environmental and organizational factors. Until now, studies on physical activity and safety in dementia have focused on residents and caregivers from the viewpoint of (individual) care provision and health benefits. There has been little to no focus on the possible influence of group dynamics between care providers with regard to physical activity and safety. The aim of this study is to gain more insight into the viewpoints and intentions of groups of professional caregivers towards safety and physical activity and the potential influence of the group-oriented setting in long-term care on physical activity of individual residents.MethodsA qualitative study comprising three focus group discussions including professional caregivers (n = 15) was conducted within two long-term care organizations in the Netherlands. Focus group discussions were structured using an interview guide derived from a preliminary framework, based on existing literature and complemented with clinical expertise.ResultsSeven themes could be derived from the focus group discussions that influence physical activity and safety: 1) Individual health and abilities; 2) Balancing physical activity and safety; 3) Physical restraints; 4) Group interests versus the individual interests; 5) Organization of care and physical environment; 6) Perceived responsibilities and tasks of professional caregivers and 7) Change is challenging.ConclusionsDue to multiple influencing factors, the balance for care providers in long-term care generally tends towards safety over physical activity. Furthermore, in order to stimulate physical activity various limitations are experienced, including the organization of care, the general health of the residents and difficulty to achieve changes in daily care. Most importantly, the group interests of both the professional caregivers and the residents have a substantial influence on the incorporation of physical activity in daily care.

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Commentary to: "Timely dying in dementia: Use patients' judgments and broaden the concept of suffering." Timely dying, suffering in dementia, and a role for family and professional caregivers in preventing it.

Publications

Commentary to: "Timely dying in dementia: Use patients' judgments and broaden the concept of suffering." Timely dying, suffering in dementia, and a role for family and professional caregivers in preventing it.

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