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 PLWD is that of becoming lost when leaving their home. Carers may restrict the freedom of PLWD due to concerns about their safety. Leaving the home unsafely is a significant risk for PLWD 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 then 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 acronym FREEDEM was used for the assessment.
Methods
This PhD used an exploratory sequential mixed methods approach 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 semi structured interviews were carried out with people living with dementia, carers, and 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 synthesised using triangulation to inform the development of FREEDEM. The assessment components were then subjected to a Delphi study. Results from the Delphi 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 from PLWD 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 considered their freedom was defended or conceded depending upon their prior relationship with the PLWD 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 liberty. 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 that facilitates their freedom and provides support to their carers in facilitating this freedom
