Quality of Life in Advanced Dementia with Late Onset, Young Onset, and Very Young Onset

Hartmann, Julia; Roßmeier, Carola; Riedl, Lina; Dorn, Bianca; Fischer, Julia; Slawik, Till; Fleischhaker, Mareike; Hartmann, Florentine; Egert-Schwender, Silvia; Kehl, Victoria; Haller, Bernhard; Schneider-Schelte, Helga; Dinkel, Andreas; Jox, Ralf J.; Diehl‐Schmid, Janine

doi:10.3233/jad-201302

Cited by 8 publications

(6 citation statements)

References 48 publications

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“…The more sedentary services that are developed for older people’s care are not adequate for younger persons with more physical possibilities, as also reported by our respondents. 23 Additionally, the need for dignified care and the fear of being socially isolated emerged. Unavailability of age-appropriate care for people with young-onset dementia and their caregivers is a durable issue: a review showed that findings about its limited availability remain largely unchanged during the past 26 years.…”

Section: Discussionmentioning

confidence: 99%

A qualitative study with people with young-onset dementia and their family caregivers on advance care planning: A holistic, flexible, and relational approach is recommended

et al. 2022

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Background: Broad consensus exists on the relevance of advance care planning in dementia. Although people with young-onset dementia and their family are hypothesized to have distinct needs and preferences in this area, they are hardly ever included in studies. Aim: We aim to explore the experiences with and views on advance care planning of people with young-onset dementia and their family caregivers. Design: A qualitative study was conducted, analyzing semi-structured interviews through the method of constant comparative analysis. Setting/participants: We included 10 people with young-onset dementia and 10 of their family caregivers in Flanders. Results: Participants lacked awareness about the concept of advance care planning, especially as a communication process. They had not or barely engaged in planning future care yet pointed out possible benefits of doing so. Initially, people with young-onset dementia and their caregivers directly associated advance care planning with planning for the actual end of life. When discussing advance care planning as a communication process, they paid ample attention to non-medical aspects and did not distinguish between medical, mental, and social health. Rather, respondents thought in the overarching framework of what is important to them now and in the future. Conclusions: Engagement in advance care planning might be hindered if it is too medicalized and exclusively patient-centered. To accommodate advance care planning to people with young-onset dementia’s and their caregivers’ needs, it should be presented and implemented as a holistic, flexible, and relational communication process. Policy and practice recommendations are provided on how to do so.

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Section: Discussionmentioning

confidence: 99%

A qualitative study with people with young-onset dementia and their family caregivers on advance care planning: A holistic, flexible, and relational approach is recommended

et al. 2022

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“…Advanced dementia was defined as Clinical Dementia Rating [ 17 ] global score 2 or 3. EPYLOGE consisted of two parts: In “part A” a prospective study of palliative care issues in 181 PWAD was conducted, the findings have been reported recently [ 15 ]. In “part B”, which is reported here, a postmortem interview was carried out with the closest relatives of PWAD who had died within the three-year study period of “part A” of EPYLOGE (N = 52) and with relatives of recently deceased PWAD (N = 48) who had additionally been identified through a large Bavarian dementia network (e.g., Munich Alzheimer Society, Alzheimer Society Germany, various long-term care facilities in Bavaria, clinical centers of the German Consortium for Frontotemporal Dementias).…”

Section: Methodsmentioning

confidence: 99%

How Do Persons with Young and Late Onset Dementia Die?

Roβmeier

Hartmann

Riedl

et al. 2021

JAD

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Background: End of life symptoms and symptom management as well as the quality of dying (QoD) of persons with advanced dementia (PWAD) have not yet been systematically studied in Germany. Objective: 1) To investigate symptoms, treatment and care at the end of life, advance care planning, and circumstances of death of recently deceased PWAD; 2) To determine whether there are differences between young and late onset dementia (YOD and LOD). Methods: The study was performed in the context of the project EPYLOGE (IssuEs in Palliative care for persons in advanced and terminal stages of Young-onset and Late-Onset dementia in Germany). Closest relatives of recently deceased patients with advanced YOD (N = 46) and LOD (N = 54) living at home or in long term care were interviewed. Results: Circumstances of death, symptoms, and treatment appeared to be similar between YOD and LOD, except that persons with LOD had significantly more somatic comorbidities and were admitted to hospital in the last three months of life more often than persons with LOD. At end of life, 60%of PWAD appeared to be “at peace”. Difficulty swallowing, gurgling, shortness of breath, and discomfort were observed most frequently. Large interindividual differences in suffering and QoD were present. Determinants of QoD were not identified. Conclusion: Our findings suggest that low QoD was caused by inadequate recognition and/or insufficient treatment of burdensome physical and emotional symptoms. PWADs’ needs should be assessed regularly, and strategies focusing on treatment and implementing support for both the patient and caregiver must be established.

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“…However, palliative care needs remain underinvestigated despite a growing number of studies on people with YOD. The German EPYLOGE-study is the only study on this topic so far [13]. Its cohort consisted of people with advanced YOD and LOD living at home or in long-term care (LTC) facilities.…”

Section: Introductionmentioning

confidence: 99%

Palliative Care in Nursing Home Residents with Young-Onset Dementia: Professional and Family Caregiver Perspectives

Maters,

van der Steen,

de Vugt

et al. 2024

JAD

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Background: The evidence underpinning palliative care in dementia is mostly based on research in older populations. Little is known about the palliative care needs of people with young-onset dementia (YOD). Objective: To describe palliative care practices including advance care planning (ACP) in people with YOD residing in Dutch nursing homes. Methods: The study presents baseline questionnaire data from an observational cohort study. Physicians, family caregivers, and nursing staff completed questionnaires about 185 residents with YOD. The questionnaires included items on sociodemographics, quality of life measured with the quality of life in late-stage dementia (QUALID) scale, dementia-related somatic health problems, symptoms, pain medication, psychotropic drugs, and ACP. Results: The mean age was 63.9 (SD 5.8) years. Half (50.3%) of them were female. Alzheimer’s disease dementia (42.2%) was the most prevalent subtype. The mean QUALID score was 24.0 (SD 7.9) as assessed by family caregivers, and 25.3 (SD 8.6) as assessed by the nursing staff. Swallowing problems were the most prevalent dementia-related health problem (11.4%). Agitation was often reported by physicians (42.0%) and nursing staff (40.5%). Psychotropics were prescribed frequently (72.3%). A minority had written advance directives (5.4%) or documentation on treatment preferences by the former general practitioner (27.2%). Global care goals most often focused on comfort (73.9%). Proportions of do-not-treat orders were higher than do-treat orders for all interventions except for hospitalization and antibiotics. Conclusions: ACP must be initiated earlier, before nursing home admission. A palliative approach seems appropriate even though residents are relatively young and experience few dementia-related health problems.

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Quality of Life in Advanced Dementia with Late Onset, Young Onset, and Very Young Onset

Cited by 8 publications

References 48 publications

A qualitative study with people with young-onset dementia and their family caregivers on advance care planning: A holistic, flexible, and relational approach is recommended

A qualitative study with people with young-onset dementia and their family caregivers on advance care planning: A holistic, flexible, and relational approach is recommended

How Do Persons with Young and Late Onset Dementia Die?

Palliative Care in Nursing Home Residents with Young-Onset Dementia: Professional and Family Caregiver Perspectives

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