Compulsive Worlds: Improving Therapeutic Practice for Tourette Syndrome and Working with Care in Dementia

Award Number
ES/T009268/1
Award Type
Fellowship
Status / Stage
Completed
Dates
12 January 2019 -
30 November 2020
Duration (calculated)
01 years 10 months
Funder(s)
ESRC (UKRI)
Funding Amount
£97,481.00
Funder/Grant study page
ESRC
Contracted Centre
Swansea University
Principal Investigator
Diana Beljaars
PI Contact
d.n.m.beljaars@swansea.ac.uk
PI ORCID
0000-0001-6325-310X
WHO Catergories
Models across the continuum of care
Disease Type
Dementia (Unspecified)

CPEC Review Info
Reference ID436
ResearcherReside Team
Published29/06/2023

Data

Award NumberES/T009268/1
Status / StageCompleted
Start Date20190112
End Date20201130
Duration (calculated) 01 years 10 months
Funder/Grant study pageESRC
Contracted CentreSwansea University
Funding Amount£97,481.00

Abstract

Rooted in my doctoral study, this Fellowship aims to develop a better understanding of human behaviours that are perceived as irrational, meaningless, purposeless and are therefore deemed unwanted.

Compulsions associated with the Tourette syndrome diagnosis are ill-understood and unwanted behaviours as they are perceived as irrational, purposeless and meaningless. Whilst previous research has focused on the brain and psyche, my doctoral research demonstrate how these behaviours are actually very much influenced by the bodily surroundings. In fact, the absence of human intentionality in compulsive touching, ordering and aligning interactions expresses the material qualities of objects and spaces for people with Tourette syndrome in completely new ways. Indeed, these compulsions reveal a whole new understanding of the relations between the human body, everyday objects and spaces. My doctoral study of these relations thus raises questions about the fundamental underpinnings of person-place relationships. This Fellowship then allows me to develop this ‘compulsive theory’ in a monograph to fulfil its full potential.

With this in mind, this Fellowship aims to further work through the effects compulsions have on the wellbeing of an individual, in particular because my work demonstrates that these behaviours have strong effects on the wellbeing of those who perform them, which includes remarkably positive ones. For instance, one participant testified how her partner sculpted a ‘thing’ she can hold in her hands and which ‘triggers’ compulsive touching, and which calms her anxieties. This demonstrates that objects can have compulsive capacities, and which can be ‘brought out’ in their design. Using these new insights in compulsivity, and as part of a small further study, I intend to develop and test ‘therapeutic objects’ that can both ameliorate bodily tensions and nervousness, and be used to actively incite sensory pleasure. These outcomes could be especially effective for people with dementia or Alzheimer’s disease, as their worlds progressily ‘contract’ to sensory ones rather than also social ones. Therefore, this study attends to the ‘compulsive vitality’ that interactions of these people with such objects might incite, and explores how this can improve their quality of life; both mentally and physically.

The study contributes in the development of dementia treatment that is based on sensory engagement, such as aromatherapy and bright light therapy (Burns et al. 2002) and recent advancement in the development of ‘sensory rooms’ (Collier & Jacob 2017), in favour of pharmacological treatment that often has detrimental effects, especially in late-stage dementia (McShane et al. 1997, Ballard et al 2001, Herrmann 2001) to combat agitation, depression, delusions, wandering, sleep disturbance, and hallucinations (Finkel et al. 2000). These insights can, in turn, be used by dementia care homes to better accommodate for the needs of their clients and alleviate pressures on care provision. This is of vital importance as the numbers of people with a dementia or Alzheimer’s diagnosis are rapidly increasing in the UK, as outlined in the UK’s Industrial Strategies.

Addressing the Industrial Strategy on two points, this Fellowship aims to:

(1) improve care provision in care home facilities for people with dementia or Alzheimer’s. I propose to do so by working with the Swansea University Centre for Innovative Aging, Care UK, large and successful care home companies (HC-One and Barchester Healthcare) and a care home charity (MHA) to streamline care provision with these technologies. I will provide both practical implementation guidance and policy recommendations for Care UK.

(2) implement the development of therapeutic object technology in Welsh Further Technical Education. I propose to set up and guide a problem-oriented project for students taking a range of courses at Gower College Swansea to design these objects.

Aims

Addressing the Industrial Strategy on two points, this Fellowship aims to:

(1) improve care provision in care home facilities for people with dementia or Alzheimer’s. I propose to do so by working with the Swansea University Centre for Innovative Aging, Care UK, large and successful care home companies (HC-One and Barchester Healthcare) and a care home charity (MHA) to streamline care provision with these technologies. I will provide both practical implementation guidance and policy recommendations for Care UK.

(2) implement the development of therapeutic object technology in Welsh Further Technical Education. I propose to set up and guide a problem-oriented project for students taking a range of courses at Gower College Swansea to design these objects.