There are estimated to be over 44 million people living with dementia in the world[1]. In the Asia Pacific region numbers are estimated 23 Million with 328,000 living in Australia with 25,100 individuals under the age of 65. The cost of supporting people living with dementia across Australia is currently estimated at just under $13 Billion[2] It is thought that 30% of those people live in formal care settings[3]
In the UK there are estimated to be 800,000 people living with dementia, the annual financial cost is estimated at £26 billion and 1/3 of people living with dementia live in a formal care settings[4].
Similar to the UK, Australia has no national legislative addressing the issue of elder abuse. The 2007 Aged Care Act requires the mandatory reporting of incidents of abuse in any formal care settings. Although the Act itself does not define elder abuse, it does require organisations to “promote high quality of care and accommodation … [and] protect the health and well-being of recipients of aged care services.” [5] The Charter of Residents’ Rights and Responsibilities [6], included as Schedule 1 of the Act, specifies that residents in aged care facilities have the right “to be treated with dignity and respect, and to live without exploitation, abuse or neglect”
Whilst the state and territorial governments have all passed adult protection legislation there is no coherent federal approach to elder abuse. Funding for agencies responding to abuse is state supported. A risk of an approach driven by different state and territory priorities may be inconsistency to, and mixed messages about, abuse across the country. Marilyn Crabtree, chief executive of Aged Rights Advocacy Services SA, stated that Australia was “at the beginning of exploring [the] social issue of elder abuse[7], but that a more joined up country wide approach was necessary. There is also no consistent definition of abuse accepted in all sates and territories. Whilst published definitions vary, many hold the tension between relationships and trust as pivotal, and that abuse can occur in any relationship where there is an expectation of trust. Such definitions echo that of the World Health Organisation (WHO).
WHO states that there is limited global data available regarding the extent of abuse in institutions such as hospitals, nursing homes and other long-term care facilities. A survey they conducted amongst nursing-home staff in the United States of America, however, suggested rates may be high with 10% of respondents admitting committing at least 1 act of physical abuse towards an elderly patient and 40% admitting to psychologically abusing patients over the last year[8]. In it’s report in 2002, WHO urges that all nations need to “ mobilise civic society” in the battle against elder abuse.
At an address in Melbourne in 0ct 2014, Graeme Samuel, President of Alzheimer Australia used his mother’s experience of increasing isolation to highlight the need to reduce the stigma and social isolation that too often resulted from a diagnosis of dementia. The creation of dementia friendly communities, happening now in both the Australia and the UK are seen as one solution to these issues.
In the opening ages of a powerful report into the harassment and abuse of people with learning disabilities Gravell[9] quotes Eliot: “Cruelty, like every other vice, requires no motive outside of itself; it only requires opportunity.” The essence of the findings is that loneliness and isolation can be generated through fear and misunderstanding a person’s uniqueness. “Abuse begins and ends with difference”, states Gary Fitzgerald, CEO of Action Against Elder Abuse, “our failure to deal with difference promotes a process of de-personalisation and de-individualisation which supports acts of discrimination and enables the individual to remain indifferent to the consequences of that action “. Gravell identified a number of solutions to the cruelty borne out of loneliness. Unsurprisingly they focus on the development of friendships, promotion of self esteem and positive self image and “encouraging person-centred interests and activities that enhance lives while also making links with the wider community”
There are calls for legislative reform across Australia to address inconsistencies in responses to abuse. Reform has begun in the UK with the forthcoming implementation of the Social care Act [2014]. Brammer[10] highlights that one positive outcome of the UK Care Act 2014 is it’s expectation that all agencies, statutory and otherwise, must cooperation. The Act’s emphasis on agency cooperation, however, risks marginalizes the most important voice, that of the abused person themselves.
When acts of abuse that are uncovered the investigated in care settings often results in the dismissal or removal from roles of individuals deemed responsible for the acts. The focus on finding the person to blame and removing them fails to address the systemic forms of abuse. Whilst I would never condone any act of cruelty or abuse, I feel we must look beyond the perpetrator to the systems that surround them. The questions isn’t why did they do this? There is so often no single definable or articulate answer. The question should be “ what was or was not in place at the time that made that individual feel they could or had to act in that way? The answer requires a systemic response to all acts of abuse. Zimbardo[11] in his examination of his now infamous Stanford Experiment talks about dehuminisation being like a cataract that clouds thinking allowing the belief that others are less human. It isn’t the person that is bad, it is the circumstance the person finds themselves immersed in that enables the disconnect from action and consequence.
The way that care is described in care reports can give an insight into the deep, often subconsciously held beliefs about people living with dementia held by formal staff. Labels such as “wanderer”, “feeder”, and “double hander” are endemic throughout traditional paperwork. A carer would never say; “ good morning feeder”, yet traditional paperwork, constructed as it is out of sight and without the input of the person, allows for such depersonalized language to exist unchallenged. It could not be sustained within a dialogue that holds the person as present even within the written word. Personhood is sustained through the depth of relationship around the person. Protection will not come about simply from telling people what is right or wrong, if it were society would enact laws and all abuse would cease. With the existing raft of legislation and human rights declarations worldwide we can see that this has not happened.
A recent report highlighted the challenges to high quality dementia care in Australia[12] including limited awareness of dementia and stigma, assumptions that dementia is a natural part of aging and not a result of disease and inadequate training for professional carers and lack of support for family carers. Similarly, in the UK while many care homes offer excellent support, some are not doing enough to provide high quality, personalised care that helps individuals to live as fulfilling a life as possible. Alzheimer’s Society’s ‘Low expectations’ report on care in care homes found that, while 74% of respondents would recommend their loved ones’ homes to others, only 41% said the quality of life of the person with dementia was good [13]
Personalisation of services, achieved through the use of person centred thinking tools enable aged care services to evidence of how they are working towards many care recipient’s rights [14]. Person centred thinking tools developed out of the processes of normalization that surrounded people living with disabilities in the 80’s and 90’s across first the USA and then the UK. The tools are both a device and a process that can be used to drive and sustain change for individuals, teams, organisations, communities and ultimately societies. Their ultimate goal, to really make a difference to someone’s life and to ensure that she has more choice and control through an ongoing loop of listening, learning and actions. In essence, realising their uniqueness as a person of standing equal to others.
There are a number of person centred thinking tools that support the changes necessary to create safe spaces. Community Circles. Relationship maps. What is working, not working? The tools draw together to develop a one-page profile. The one page profile is both the outcome of person centred meetings and the driver to review and change.
Whilst there is no empirical data currently available to support the use of person centred thinking tools to reduce the incidence of abuse, the anecdotal evidence is compelling. One lady’s family, having worked through a one page profile meeting were so happy to have the opportunity to talk about their aunt’s proud past: “it is so important for people to know what she has achieved. It is easy to think that a line has been drawn, but this shows that she still matters”.
Historically we have focused on the impact of the actions or inactions of the person. One of the key aspects of personalisation is a critical review of how we use space. Personalisation creates the opportunity to develop spaces to live in rather than space for staff to work in. One lady living in a care setting tended to spend the majority of her day in bed. She often made loud sounds clearly indicating distress. In developing her one page profile I sat and spoke with her and her keyworker. Her relationship map identified in a starkly visual way that she had no contacts in her life but paid staff. In conversation she said that she did not always recall why she might call, but thought that it might be because she gets lonely at times and just wants reassurance that people are nearby and that they haven’t forgotten her. We were able to share this with staff, creating a greater understanding of the best support for her. During the meeting we also found out that this lady loves to have a glass of red wine with her meals. Staff asked her if she would like a glass that day. Her eyes lit up and she said very clearly “yes please” and staff now makes sure that this happens every day. The act of entering her room, saying hello, even just bringing and taking away the glass all offer opportunity for contact that reduces isolation and raises self esteem, together reducing the risk of abuse.
Isolation in busy care settings is more common than we might think . In many care settings there are people who do not use language, or who are culturally or linguistically isolated. In New South Wales residential care settings commonly reported that the social isolation of people with cultural and linguistic diverse backgrounds may be the cause of behavioral ad psychological symptoms of dementia. One such lady, Phyllis loved to feel connected, but had become isolated in the past, because she could also express her self-using words. Being a very shy person she withdrew form activity. Through observation, listening with our eyes, we saw that she loved to look at photographs and really enjoys sweet treats. We matched her with Mike, a larger than life character who loved to sing as he went about his work. The two now spend time together in a quiet space in the setting, sharing coffee and cake. As they sit together Mike often sings to Phyllis, or talks to her about her photographs and reading her letters and cards. Phyllis has physically blossomed with this contact. She has gained weight and staff report that she is more likely to initiate eye contact as they pass.
John Bird, the founder of the Big Issue, inspired by Octavia Hill the Victorian social reformer has said to give people the power to raise themselves we must give them a ‘hand up, as opposed to a hand out’. Rather than champion cooperation, those involved in adult protection may better serve the person by accepting that for the most vulnerable to be less at risk of abuse requires a whole system rebalance of power. True equality can only come about through coproduction. Without open collaboration within the triad of state, agency and person there remains an inherent danger that the person’s views, wishes and desires are lost altogether within a web of well meaning paternalistic collusion.
Personalisation, driven by the use of person centred thinking tools, is a tried and tested method of maintaining the integrity of the person, holding their voice at the center of all decision making.
[1] Policy Brief For Heads Of Government: The Global Impact Of Dementia 2013–2050
[2] ADI (2014) Dementia in the Asia Pacific Region
[3] Australian Institute of Health and Welfare Canberra (2012) report Dementia In Australia
[4] Alzhiemer’s Society (2014)
[5] Aged Care Act 1997
[6] Ibid Schedule 1
[7] Australian Ageing Agenda: access on line 29/1/15 http://www.australianageingagenda.com.au/2014/08/08/national-elder-abuse-hub-development/
[8] WHO Global status report on violence prevention 2014
[9] Gravell. Loneliness and Cruelty Lemos & Crane London May 2012
[10] Brammer,A. (2014) safeguarding Adults, Palgrave Macmillan, Basingstoke
[11] Zimbardo, P. (2011) The Lucifer effect: How good people turn evil
[12] Australian Institute of Health and Welfare Canberra (2012) report Dementia In Australia
[13] DoH 2013 Dementia: A state of the nation report on dementia care and support in England
[14] Aged care act 1997, schedule 1 and schedule 2
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