Conceptual frameworks for thinking about dementia

A wide range of conceptual frameworks are available for understanding and thinking about dementia and dementia care. In this section you can expect to find papers that range from broader philosophical discussion to specific theoretical frameworks.

Respite in dementia: An evolutionary concept analysis

O’Shea, E., Timmons, S., O’Shea, E., Fox, S. and Irving, K.
Dementia: The International Journal for Research and Practice
2017
In this article, O’Shea et al. (2017) focus on respite and how it is conceptualised. A concept analysis of the conceptual and empirical literature was adopted. A range of surrogate terms were identified, falling into two clusters, respite as a service and respite as an outcome.
The study identified two distinct, but inter-related categories previously associated with the concept of respite: client factors and services factors. The former includes five factors (dyadic relations, recognising and accepting need, carer psychological needs, restorative occupation and stigma) and the latter four factors (the service model and characteristics, care quality and staff expertise, meaningful occupation for the person with dementia, and communication and support]. For the carer, respite must be seen as mutually beneficial for both the carer and the person with dementia. The article reports that the evidence shows mixed outcomes in relation to respite. It outlines a conceptual model for respite as it relates to dementia. The article compares the parallels and dissimilarities with concept analysis of respite in the area of older people and intellectual disabilities. Respite as a term it is argued is limited because of its almost exclusive concentration on the experiences of the carer. An alternative term ‘restorative care’ is proposed instead to describe the process whereby both the carer and the person with dementia can mutually benefit from the experience.

Dichotomising dementia: is there another way?

McParland, P., Kelly, F. and Innes, A
Sociology of health & Illness
2017
In this article Mc Parland et al. (2017) discuss the narratives of “tragedy” and “living well” with dementia. They suggest that these two discourses effectively sit in opposition to each other and do not reflect the complex reality of what it means to live with dementia.
Accepting that the move to a positive or living well discourse was a necessary response to the tragedy discourse, they argue there is the potential that those who do not meet our notion of what it means to live well with dementia risk even further disenfranchisement and that this tension between the two discourses has the potential to create division among people with dementia themselves. The authors suggest it is time to challenge these seemingly opposing discourses and create one that more accurately reflects and supports the multiple realities of dementia.

The Nun Study and Alzheimer’s disease: Quality of vocation as a potential protective factor?

Keohane, K. and Balfe, M.
Dementia
2017
This paper uses data from the Nun Study; an ongoing longitudinal epidemiological study that began in 1986, in America. Over 900 nuns have agreed to undertake regular psychometric testing and to donate their brains post-mortem for autopsy.
Keohane and Balfe (2017) consider the data in terms of Max Weber’s concept of ‘beruf’ or calling. While acknowledging that other factors may also be at play, the authors posit that vocation may offer some protection against dementia. Some of the nuns who died had significant biological symptoms post mortem but had appeared to be functioning quite highly before death. Research has already established that education and occupation may offer some protection and the authors suggest that an intense vocation coupled with complex intellectual activities and the social support found in such a cohesive community may facilitate development of active brain reserve against dementia. They discuss the loss of vocation in modern society and the possibility that we are moving towards “a new wave of dementiagenic currents.”

Concepts for communication about risk in dementia care: A review of the literature.

Stevenson, M., McDowell, M.E. and Taylor, B.J., 2016. Concepts for communication about risk in dementia care: A review of the literature. Dementia, p.1471301216647542
Dementia
2016
Pointing to the inherent nature of risk in health and social care for people with dementia, Stevenson et al. (2016) report on a synthesised review of research on risk concepts and communication in dementia.
Most literature focused on physical safety risks although a smaller number of articles did refer to psychosocial risks. Risk was found to be constructed differently among people with dementia, caregivers and professionals, with different conceptual understandings and approaches to risk. This variety, they argue, adds weight to the need for clear, transparent communication of risk, suggesting that a qualified knowledge base of risk outcomes in dementia care would support the development of better policy and practice.

Social health and dementia: a European consensus on the operationalization of the concept and directions for research and practice.

Dröes, R.M., Chattat, R., Diaz, A., Gove, D., Graff, M., Murphy, K., Verbeek, H., Vernooij-Dassen, M., Clare, L., Johannessen, A. and Roes, M.
Aging & Mental Health
2017
In response to the recent proposed reformulation of the WHO definition of health by Huber et al.
(2011), and in consultation with members of the European working group of people with dementia, members of the INTERDEM Social Health Taskforce set out to operationalise the proposed three dimensions of social health for people with dementia. These are: the capacity to fulfil one’s potential and obligations; the ability to manage life with some degree of independence; participation in social activities. Droes et al. (2017) provide a consensus based operationalisation of Huber’s concept of social health for people with dementia, identify factors that influence the persons’ capacity within each dimension, interventions that can support social health for the person and make recommendations for research and practice.

Reconciling mental health recovery with screening and early intervention in dementia care

IRVING, K, LAKEMAN, R
International Journal of Mental Health Nursing
2010

Irving and Lakeman (2010) acknowledge that the concept of person-centred care has become a catchphrase for good care but has not resulted in improvements in care for everyone with dementia.

They take a critical look at the concept of recovery as used in mental health and its potential application to dementia care. They explore the similarities and differences between it and person-centred care, the difficulties of using the concept of recovery in the context of a degenerative condition such as dementia and take a closer look at its relevance for dementia screening and early intervention. They conclude that the recovery movement has much to offer dementia care and vice versa. 

Developing theoretical understandings of dementia and their application to dementia care policy in the UK

INNES, A., MANTHORPE, J.
Dementia
2013

Innes and Manthorpe (2013) critically assessed three influential theoretical perspectives (biomedical, psycho-social and critical social gerontology) in shaping dementia policy in different regions of the UK.

They offer the policy document used in the consultation process of the national dementia strategy in NI as an illustrative example of policy on dementia that engages with person-centred principles, a hallmark of social-psychological perspectives on dementia.  They argue that lessons from different theoretical perspectives need to be explicitly recognised, challenged and valued for a truly integrated dementia care policy model to evolve.