Making decisions; taking action
Making decisions and being safe are some of the fundamental worries for people with dementia and their carers. People fear that they will lose the rights to make decisions but also they fear that they will not be looked after well and that their vulnerabilities will make them open to exploitation and abuse. These worries are shared by family carers.
Professor Jill Manthorpe FAcSS and Dr Kritika Samsi at the Social Care Workforce Research Unit at King’s College London carried out research to track the changes being brought about by the Mental Capacity Act 2005 and how it is affecting people with dementia, their family carers and care providers. This was part of a larger research programme investigating evidence based interventions in dementia (EVIDEM).
They concentrated on ordinary or everyday decisions – made by family members and frontline professionals – which are often overlooked.
This includes new rights to appoint decision makers and to make decisions in advance. Many older people interviewed welcomed these new rights but some preferred to rely on the doctors they knew or their family to make important decisions.
The researchers explored how this law also potentially helps people with dementia have greater access to justice since it established a new criminal offence to ill-treat or neglect a person lacking decision-making ability. They found that few cases have been prosecuted but generally professionals welcomed this.
Another linked study, with Lynne Phair, found that many hospital staff were woefully uninformed about the Act as training and information had not been a priority.
There were mixed pictures in other settings too, but adult safeguarding practitioners were generally the best informed.
The team built on their earlier work compiling accessible national training materials for the Act [pdf]. Research provided a way of benchmarking the changes in practice. Organisations such as the Social Care Institute of Excellence (SCIE), Dementia UK, Alzheimer’s Society, the British Association of Social Workers, Community Care Inform, and Making Research Count, use the findings in face to face training, online resources, and professional practice to promote good practice and share information. This includes informing the contents of fact-sheets so that they focus on what proved to be common questions and information needs. The team is involved with new government initiatives to refresh the Act, provides evidence to policymakers, and continues to offer training to care providers drawing on the research’s findings that practitioners like ‘real life’ examples and being able to relate the law to themselves and their own families.