Quality of Care of Older People Living with Advanced Dementia in the Community in Israel

Abstract

Because of the high rates of suffering, there is a need to address the complexity and severity of symptoms and problems faced by OPAD in the community and their caregivers. The priorities should include education of healthcare providers on palliative care, focusing especially on symptom-management needs of OPAD and comfort around dying.

End-of-Life Care and Quality of Dying in 23 Acute Geriatric Hospital Wards in Flanders, Belgium

“…40e44 Comparison of the CAD-EOLD scores with those from other studies is difficult because of important differences in setting and population, although the present study results seem to support previous research that used the same tool. 14,17,27,31 It was for instance found that both nursing home residents with dementia and older patients living with advanced dementia in the community died with a lack of serenity, peace, and calm. 14,17,27,31 Results of both the present study and these earlier studies stress the magnitude of unmet psychosocial and existential needs at the end-oflife and the need to address these needs.…”

The extended palliative phase of dementia – An integrative literature review

“…1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 Our review acknowledged that the under-recognition of the extended palliative phase of dementia is largely due to a lack of understanding and awareness among frontline practitioners. This was seen to be the result of a general dearth of specific education in the area of advanced dementia care (Potter et al, 2013;Sampson, 2010), together with lack of systematic opportunities for staff to participate in continuous, evidence-based education and training in this area (Raymond et al, 2014b;Sternberg et al, 2014;van der Steen et al, 2014b). However, we recognise that an understanding of the advanced stage of dementia and the extended palliative phase of dementia is not likely to feature strongly in education for health and social care professionals while it is not recognised and clearly defined in the empirical and policy literature.…”

“…Perrar et al's (2015) systematic review revealed a dearth of empirical findings on the needs of people with 'severe dementia'. The main identified challenges were and within community care to support people with dementia in their own homes and their family carers (Goodman et al, 2010;Phillips et al, 2013;Sternberg et al, 2014). Candy et al, (2015) concluded that high quality empirical work is needed to ensure that the recommendations in the UK quality statements on end of life care in dementia are indeed best practice.…”

“…Ouchi et al, 2014;Potter et al, 2013;Raymond et al, 2014b;Sampson, 2010;Sternberg, Bentur & Shuldiner, 2014) Albers, Van den Block and Vander Stichele (2014). reported high levels of emotional and physical burden among nursing staff caring for residents with dementia at the end of life in nursing homes Van der Steen et al, (2014a).…”

“…Seeing carers as core partners in care is clearly endorsed within a palliative care philosophy and is advocated in recent dementia care policy(Pot & Petrea, 2013;Sternberg et al, 2014;van der Steen et al, 2014a). By contrast, in the literature there is a lack of recognition of the experienced carer as 'co-expert'.Thuné-Boyle et al's study (2010) highlighted that few relatives perceived their significant other with advanced dementia as being in pain, despite many suffering from urinary tract infections, arthritis and pressure sores.Likewise, Hennings et al (2010) argued that family carers often require specific knowledge and competences.Clearly, targeted education is appropriate for new carers and those carers with no prior caring experience to avoid 'trial and error' learning.ImplicationsThe findings of this integrative literature review have helped inform our subsequent project work around the concept of 'Dementia Palliare' which represents a new way of working to help support people with advanced dementia who are not yet requiring end of life care, but who have limited opportunities for self-realisation and are increasingly reliant on the support of family carers and/or professionals for their health and wellbeing.…”