A need-based, multi-level, cross-sectoral framework to explain variations in satisfaction of care needs among people living with dementia

Abstract

Background: Provision of care and support for people with dementia and family carers is complex, given variation in how dementia manifests, progresses and affects people, co-morbidities associated with ageing, as well as individual preferences, needs, and circumstances. The traditional service-led approach, where individual needs are assessed against current service provision, has been recognised as unfit to meet such complexity. As a result, people with dementia and family members often fail to receive adequate support, with needs remaining unmet. Current research lacks a conceptual framework for explaining variation in satisfaction of care needs. This work develops a conceptual framework mapped onto the care delivery process to explain variations in whether, when and why care needs of people with dementia are met and to expose individual-, service-, system-level factors that enable or hinder needs satisfaction. Methods: Data collected through 24 in-depth interviews and two focus groups (10 participants) with people with dementia and family carers living in the North East of England (UK) were analysed thematically to develop a typology of care needs. The need most frequently reported for people with dementia (i.e. for support to go out and about) was analysed using themes stemming from the conceptual framework which combined candidacy and discrepancy theories. Results: The operationalisation of the framework showed that satisfaction of the need to go out was first determined at the point of service access, affected by issues about navigation, adjudication, permeability, users' resistance to offers, users' appearance, and systems-level operating conditions, and, subsequently, at the point of service use, when factors related to service structure and care process determined (dis)satisfaction with service and, hence, further contributed to met or unmet need. Conclusion: The conceptual framework pinpoints causes of variations in satisfaction of care needs which can be addressed when designing interventions and service improvements.

Information seeking amongst informal caregivers of people with dementia: a qualitative study

“…Participants' accounts of navigating a complex and disjointed system are mirrored in an earlier paper (Peel and Harding, 2014). Our findings add further evidence of the great need for the provision of a guide to local services, written in a clear, userfriendly way, describing what services are available, how and when to access them (Bressan et al, 2020;Carers UK, 2020;De Poli et al, 2020); a one-stop source where all information needs can be met (Sutcliffe et al, 2015), with professional support to facilitate navigation (Maio et al, 2019). Additional pressures arose from cuts and reorganisation of services at times of austerity, a finding seen in other studies (Hole and Harrison Dening, 2019;Maio et al, 2019;Moriarty et al, 2015).…”

“…, 2020). Information seeking was constrained by factors which have been previously identified, such as limitations in scientific or professional knowledge about dementia (Aldridge and Harrison Dening, 2019), carers' stoical attitudes, or failure to perceive needs (De Poli et al. , 2020).…”

The Remote Assessment and Dynamic Response Program: Development of an In-Home Dementia-Related Care Needs Assessment to Improve Well-Being

“…Effective dementia care requires planning that is tailored to the care values and specific needs of the person living with dementia, especially in the early stage of dementia when they can and should be more involved ( De Poli et al, 2020 ; Monin et al, 2019 ; Whitlatch & Orsulic-Jeras, 2018 ). In a recent consensus study report on caring for persons living with dementia, the National Academies of Science, Engineering, and Medicine identified “attention to each person’s needs and values” as a guiding principle for dementia care ( NASEM, 2021 ).…”

“…Clinical assessment of dementia emphasizes cognitive testing, which gives little insight into unmet needs related to functional deficits or the care environment. As a result, unmet dementia-related care needs are highly prevalent, and threaten the well-being, safety, and ability to age in place for persons living with dementia and also for their spouses or other family care partners ( Black et al, 2013 , 2019 ; Boots et al, 2015 ; De Poli et al, 2020 ; Gaugler et al, 2005 ; Monin et al, 2019 ; NASEM, 2021 ). Two major components of a dementia-related care needs assessment are notably absent from both standard practice and from evidence-based support programs.…”

“…First, few begin with an assessment of the care values of the person living with dementia ( Whitlatch et al, 2017 ), which is critical to achieving person-centered care ( Fazio et al, 2018 ). Second, there is no standard, objective method for collecting ongoing in-home assessments of the routines and activities that make up the everyday care situation ( De Poli et al, 2020 ), which is essential to understanding care needs as dementia advances. The Remote Assessment and Dynamic Response (READyR) Program was developed in order to address the current lack of dementia care planning programs that assess the care needs through: (a) knowledge of the care values of the person living with dementia, and (b) ongoing ecologically valid data from the home setting.…”