Caring for a family member suffering from Alzheimer's disease is a labour of love, but a heartbreakingly difficult one. Here, a former carer explains how her local Dignity Steering Group is working together with carers to promote dignity and respect for people with dementia.
The Barnsley branch of the Alzheimer Society have been encouraging former carers who are no longer in their caring role, either due to bereavement or because their partners have entered long-term care, to get involved in the Dignity in Care campaign.
Pam Evans, Administration and Events Organiser for the Barnsley branch of the Alzheimer's Society and a former carer herself takes up the story.
"In Dementia Awareness Week in 2007 we set up a new service, the Keeping In Touch Group (KIT). From an initial take-up of eight members this has grown in the last 12 months so that we now have a thriving group of nearly 30.
"When we first got together as a group, it soon became clear that, as well as offering help and support to each other, we all felt very strongly that we were in a position to help those who were to come after us. Many of us felt that our loved ones had not received the best possible care in terms of dignity and respect, and we wanted to use these negative experiences in a positive way that would benefit others.
"We started by inviting the Patient Liaison Manager from Barnsley District General Hospital to one of our meetings. He listened to our experiences and we put to him a range of basic measures that we thought might help solve some of the problems associated with dementia - such as meal times and supervision of medicines.
"At the time the hospital were launching their Dignity Steering Group and myself and two of our members were invited to go along to speak to the group, made up of senior nursing staff and governors.
"We told them some of the problems we felt were specific to dementia patients and put forward some of our ideas for dealing with them. Our input was very well received and I was invited to join the steering group to represent the view of our people with dementia. Mildred King, a former carer, was asked to go and speak to the Dignity Champions Group and Mildred is now our regular representative at their meetings."
The Dignity Steering Group has pledged to ensure that dignity and respect for patients and the public are an integral part of practice for all Trust staff. A Dignity Challenge Action Plan was drawn up and the Trust has been working hard to achieve the standards set out in the plan. Everyone involved is passionate about everyone's rights to dignity and respect, and excellent results have been achieved already.
Some of the outstanding results so far are:
- Protected mealtimes - with permission for carers to stay and help with their relative
- New hospital wear - ladies' pyjamas, new gowns, men's pyjamas and comfort blankets all with extra dignity retaining measures built in.
- New privacy and dignity questionnaires.
- New signs relating to privacy and dignity on all wards.
- Investigations and measures put in place to abolish mixed sex wards wherever possible.
A policy for Privacy and Dignity is also being worked on, and staff training to include dignity and privacy issues and identified in appraisal procedures.
"Obviously the implementation of the policies is not an easy task but it is achievable. Underpinning everything we do is our own passionate belief that everyone has a right to dignity and respect. As a representative of the Alzheimer's Society I feel honoured that I am able to champion the specific needs of our members.
" We have been able to give advice to our members about how to get the best from their hospital stay and will continue to see through the Dignity and Respect challenge on behalf all of our members affected by dementia - now and in the future."