An assessment of liberty for people living with dementia V 1.0
Research type
Research Study
Full title
The development of an occupational therapy assessment of liberty for people living with dementia. A mixed methods study
IRAS ID
257586
Contact name
Sarah Goldberg
Contact email
Sponsor organisation
University of Nottingham
Duration of Study in the UK
0 years, 7 months, 31 days
Research summary
Research summary- The majority of the 800000 people who live with dementia (PLWD) remain in the community and are supported by over 600,000 unpaid carers. People who live with dementia (PLWD) may have problems with memory and cognition such as disorientation to time and place and inability to recognize and weigh risk. Over time the ability to make some decisions may be lost, this loss of decision making ability is defined as a lack of capacity. The PLWD may lose capacity on whether it is safe to leave their home, causing attempts to leave the home unsafely. Carers may prevent the PLWD leaving their home through concerns for their safety. Such restrictions represent a delicate balance between the freedom of the PLWD and the carers concerns for the wellbeing of the PLWD.\n\nA change in the law is proposed meaning that in private homes there will be a new legal regime for PLWD whose deprivation of liberty is attributable to the state, however informal carers in a domestic setting will have no system of formal structure for depriving a PLWD from having freedom. This research proposes that PLWD will instead have the benefit of an assessment that facilitates their liberty and support their carers. This assessment may offer patient benefits such as sitting services, and telecare technology facilitating the liberty of PLWD and reducing the pressure upon carers. The identification of such interventions is central to the work of occupational therapists.\n\nThe study will involve 30 interviews, 10 with PLWD, 10 with occupational therapists and 10 with carers. The interviews will take up to an hour. The interview data will be combined with the findings from the literature review to develop the assessment. This will be refined further in a Delphi study.\n
Summary of results- Within the UK over 850,000 people live with dementia, 650,000 remain in their homes with the support of 600,000 carers. A problem faced by community dwelling people with dementia is that of becoming lost when leaving their home. Carers may restrict the freedom of people with dementia due to concerns about their safety. Leaving the home unsafely is a significant risk for people with dementia, with up to a third of people living with the condition becoming lost at some point. This is a frightening and distressing experience which may lead to injury and anxiety. However, when involved in research people living with dementia have identified the benefits of being involved with their local community and environment. For those whose condition is more advanced being able to walk may be calming and reduce agitation and distress. The issue of freedom for people living with the dementia is accordingly a difficult balance between the benefits of risk and safety. This research developed an assessment of freedom for people living with dementia and a theoretical model of freedom. The assessment is intended for occupational therapists or other healthcare professionals working with people with dementia who want to leave their home when it is unsafe for them to do so. The acronym FREEDEM was used for the assessment.
Methods
This PhD used a literature review, interviews, and a survey of experts to develop FREEDEM. A theoretical model of freedom was initially developed from philosophy. A scoping review collated relevant literature to identify the elements of this assessment. Thirty interviews were carried out with ten people living with dementia, ten family carers and ten occupational therapists. In these interviews the definition of freedom was explored and how this changed as the condition progressed. This data was used to refine the theoretical model of freedom. Results from the interviews and scoping review were brought together to inform the development of FREEDEM. The individual statements in the FREEDEM assessment were then put to a panel of experts in dementia to identify which statements were most important, if anything was missing from the assessment, and whether any statements could be removed. Results from this study were used to finalise FREEDEM. Patient and public involvement was integrated into the research process, including study documentation and topic guide design.
Results
This assessment includes the assessment of risk, early warning systems, carer education, social groups, and telecare technology. The theoretical model identified that elements of the definition of freedom included freedom of movement, social integration, choice of activities and relational autonomy. People living with dementia demonstrated an ethic of care towards their carers and the wider community at a point when they had capacity, and insight into the implications of their condition. This was manifested as a concern for both their carers and the wider community if they became lost. This ethic of care changed as the condition progressed. This then led to a situation where freedom may be sought, and carer’s freedom may be compromised as a result. Carers freedom was defended or conceded depending upon their prior relationship with the person with dementia and other demands upon their time.
Conclusion
In the event the freedom of the person living with dementia is restricted they are potentially deprived of their freedom. A legal authorisation may be required for the carer’s actions. Rather than this formal authorisation the assessment aims to facilitate freedom for people living with dementia thereby avoiding the needs for a judicial process. Instead, the person living with condition will be assessed by an occupational therapist who will carry out an assessment which facilitates their freedom and provides support to their carers’ in facilitating this freedom.
REC name
Yorkshire & The Humber - Bradford Leeds Research Ethics Committee
REC reference
19/YH/0275
Date of REC Opinion
11 Sep 2019
REC opinion
Further Information Favourable Opinion