The experiences of older people with dementia within the framework of the Mental Health (Scotland) (Care and Treatment) Act 2003

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1 The experiences of older people with dementia within the framework of the Mental Health (Scotland) (Care and Treatment) Act 2003 Professor Graham Jackson Alzheimer Scotland Professor of Dementia Care Dr Paul Brown Specialty Trainee Old Age Psychiatry

2 Why study this area? Profile of mental illness consistently increasing high on political agenda Dementia designated a national priority Older adult mental health given increasingly greater priority Has delivered some improvements in the care of older adults

3 Why study this area (2)? Lack of understanding of the interface between the older adult and the Mental Health Act Mental Welfare Commission reports consistently demonstrate increasing likelihood of detention in older adults

4 Detention in Hospital Emergency Detention (up to 3 days) Short Term Detention (up to 28 days) ꜜMental Health Service Tribunal Compulsory Treatment Order (CTO)

5 Criteria for making a CTO Presence of a mental disorder Medical treatment is available which will stop condition getting worse, or help treat some of the symptoms If that medical treatment was not provided, there would be a significant risk to the person, or to any other person Because of mental disorder, the ability to make decisions about medical treatment is significantly impaired The use of compulsory powers is necessary.

6 The Tribunal can decide to: Refuse the application Make an interim CTO Grant the application and make a CTO.

7 Conditions that you might have to comply with if you are on a CTO stay in hospital be given medical treatment under the rules set out in part 16 of the Act attend for medical treatment as instructed attend certain community care services stay at a particular place in the community allow visits in your home by people involved in your care and treatment notify your MHO if you want to change your address your MHO has to agree to any change in your address

8 Study Methods Prospective survey Obtained data from Mental Health Tribunal Scotland Defined sample period February 2014 July 2014 Inclusion criteria : >65, subjection to Scottish hospital detention (specifically Short Term Detention Certificate (STDC) Data on 443 hearings Semi structured interviews with patients and carers

9 Feelings of the relative/carer surrounding the detention of the patient Experience of the ongoing process of detention Level of inclusion in the process (including level of information given) Perceived effects of detention on the patient Experience of advocacy services Experience of working with solicitors Experience of being named person (if applicable) Knowledge (if any) of the medication (s) used to manage their relative s dementia Experience of working with Mental Health Officers (MHOs) Experience of the tribunal hearing (if they attended)

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11 Diagnosis Percentage (%) Dementia 44 No dementia diagnosis 40.4 Excluded 15.5

12 Patient present at tribunal (%) Patient absent at tribunal (%) Hearings with dementia diagnosis specified Hearings without dementia diagnosis specified

13 Curator present at tribunal (%) Curator absent at tribunal (%) Hearings with dementia diagnosis specified Hearings without dementia diagnosis specified

14 Tribunals with Interim outcome patient attendance at tribunal 42.3 % patient non-attendance 57.6 %

15 Qualitative findings Interviews of people with dementia and relatives including group discussion with people from SDWG In general a stressful experience for all concerned A number of important themes identified Common concerns identified

16 Main themes identified Lack of inclusion/participation in the process Excessively complex explanatory paperwork delivered at inappropriate times Lack of awareness of role/function of named person Anxiety surrounding the tribunal process Generally positive advocacy experiences Apprehension regarding what will happen to the person after diagnosis (longer term specifically related to MHA use)

17 Conclusions Low patient attendance rates at tribunals (worsening with age) Attendance lower for people with dementia Attendance associated with lower number of interim orders Indicative of a departure from relevant legislative principles Approximately one fifth of curators did not attend the hearings of people with dementia; evidence of a departure from curator guidance Conducted in Scotland but general conclusions should be applicable in other jurisdictions Should tribunals be more dementia friendly?

18 Acknowledgements This work was funded by a Grant from Alzheimer Scotland. We would like to thank members of the Scottish Dementia Working Group and of the National Dementia Carers Action Network, as well as the Mental Health Tribunal Service for Scotland.