Care for those with dementia has a way to go, says Irene Oldfather
On being diagnosed with dementia, author Terry Pratchett spoke of feeling as though he was standing on a beach alone, with the tide having gone out, saying: “I felt totally alone, with the world receding away in every direction.”
A not uncommon view, I can confirm, as programme director of the ALLIANCE’s Dementia Carer Voices project which raises awareness of the rights of those living with dementia.
Can you imagine, as the illness advances, being in a care home, or hospital ward, with your only portal to the outside world for years being a window? These are not exaggerated descriptions, but the recorded evidence of a Mental Welfare Commission (MWC) investigation showing that, despite being physically able, older people had not crossed the threshold of care to experience the outdoors for years.
A new report to be published by the MWC early in 2014 will examine changes across continuing care wards since publication of Older and Wiser in 2007. It will make interesting reading and, while I would expect improvement, it worries me that there will still be evidence of inappropriate treatment of vulnerable people. It is a story that we hear too often at Dementia Carer Voices.
Many countries look to Scotland with admiration
In the intervening period there has been a raft of policy initiatives, and I detect no unwillingness among politicians or civil servants to develop the policy agenda. Indeed many countries look to Scotland with admiration.
However, despite that highly developed policy framework, carers and people with dementia tell us that, in practice, change has come slowly. Read the MWC report “Starved of Care” (October 2011) about Mrs V who had dementia and died in a general hospital. Look at the high proportion of cases upheld by the Scottish Public Services Ombudsman because people’s rights were not fully respected. Listen to the Care Inspectorate, which expressed “serious concerns about medication, nutritional care and training” during a recent high profile Care Home inspection. Actually ask any carer with experience of the “system”.
Most of us find stories of system failures in relation to our elderly abhorrent, but is there more we can do to make change happen?
Commissioner for Older People
In Scotland we have a Commissioner for Children and Young People, linked to the rights of the child, but not a Commissioner for Older People and those with Dementia. Independence of the political environment backed by powers of enforcement and investigation are an important facet of such a system and can drive necessary change of culture and attitude.
It is time for dialogue around integration versus isolation. Isolating people behind closed doors in continuing care wards with no access to outdoor space, or on the “top floor” of a care home, are options that fail them, as individuals. Challenging behaviour is often the result of frustration and who wouldn’t be frustrated if not allowed to cross the threshold and breathe fresh air? While it is perceived as having safety advantages, being on the top floor of a care home can perpetuate fear of “the next progressive step”, and stigmatises dementia. We have to ask if this is an acceptable safety mechanism and we need a discussion around balanced risk. Bottom line, would you want to end your life with these experiences? As policy moves towards keeping people in their own homes, we see more challenges in longer term care but living in a care home shouldn’t mean a disconnect from society – it shouldn’t be a death or prison sentence.
A recent exercise undertaken by the ALLIANCE demonstrated that carers of people with dementia would like the opportunity, not for more respite, but for more “joint activity”. This means creating places and communities where people with dementia and their carers are not judged, but are openly welcomed and understood. Put quite simply “things to do, people to be with and places to go”. Locking people up behind closed doors with no access to outdoor space is inhumane. It’s time for change.
• Irene Oldfather is programme director of the ALLIANCE, Dementia Carer Voices project which raises awareness of dementia and carer rights. She is a former MSP and set up the cross party group on Alzheimer’s and dementia.