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Personal Account

Abuse and use of restraint

In my mid-fifties I started to experience memory problems and finally I was diagnosed with Early Onset Alzheimer’s in 2012 at the age of 62. There is no way I can describe the shock of receiving this diagnosis and, as I tried to come to terms with it, there was more bad news as I learned that there are no formal supports available for people with dementia under the age of 65. Having spent my adult life working in the disability sector and campaigning for human rights, I could not accept this and I knew I had to fight for my rights and for the rights of all people living with dementia. This led me to become involved in the Irish Dementia Working Group and later the European Working Group of People with Dementia. As advocates we are a voice for every person with dementia, including the thousands of people in nursing homes and hospital beds who may not be able to speak out for themselves. People living with dementia have the same human rights as everyone else, including the right to liberty and the right to privacy. Many of us want to remain living in our own homes, but if a time comes when we require long-term care, we and our families need to know that these rights will be met.

When a person with dementia moves into a care home, they may feel incredibly confused and experience further stress. We must ensure that people are not subject to the overuse of chemical and physical restraint in these situations and call on all European countries to introduce legislation ensuring that restraint is only used as a measure of last resort. How these laws are implemented is key and restraint should only be used by staff with appropriate training in dementia and human rights. It is also vital that restraint is not used in response to behaviours such as wandering and this is something I feel very strongly about. Having an inquisitive nature I can easily imagine a time when I would feel the need to wander and explore and I want to know that I would be treated with dignity and respect in that situation.

We must also ensure that a robust system of checks and balances is in place whenever restraint is used and a person with dementia is deprived of his or her liberty. Article 14 of the United Nations Convention of the Rights of People with Disabilities provides protection for persons with disabilities in relation to deprivation of liberty, but disappointingly, my home country of Ireland is the only European country that has not yet ratified this convention.

Having working in the disability sector for many years, and from personal experience visiting loved ones in nursing homes, I have seen first-hand situations where people living in long-term care were not afforded their dignity and where their rights were not respected. I hope this is changing and in time that we will see a decrease in the use of restraint and a society in which people with dementia are truly valued and given the care and respect they deserve.

 

Helen Rochford-Brennan (EWGPWD), Ireland.

 

 

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Last Updated: Monday 03 February 2020

 

 
  • Acknowledgements

    This Dementia in Europe Yearbook received funding under an operating grant from the European Union’s Health Programme (2014-2020). The content of the Yearbook represents the views of the author only and is his/her sole responsibility; it cannot be considered to reflect the views of the European Commission and/or the Consumers, Health, Agriculture and Food Executive Agency or any other body of the European Union. The European Commission and the Agency do not accept any responsibility for use that may be made of the information it contains.
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