It is estimated dementia effects’ 44 million people worldwide. Leaders from the G8 nations gathered in London in December 2013 to discuss the growing impact of the condition globally and to develop an international strategy to address dementia and its effects on individuals’ lives.
The summit set an ambitious target to identify a cure, or a significant disease modifying therapy, for dementia by 2025, agreeing to increase spending in the areas of dementia research and clinical trials globally to achieve this ambition. The world is working toward safeguarding all our futures in its commitment to tackle dementia, however, we also need to focus on the provision of services for those whose lives are currently touched by dementia, as well as creating new ways of developing and delivering support services to the next generation of dementia sufferers. There are around 800,000 people with dementia in the UK, and the disease costs the economy £23 billion a year. By 2040, the number of people affected is expected to double – and the costs are likely to treble.
Therefore, there are significant numbers of people who may require some level of care and support before the G8‘s ambitions are realised. Many of those who require such support would prefer to live in their own homes.
However, the quality of support in the home for some whose lives are touched by dementia is variable, sometimes abusive and of poor quality leading to breakdowns in care and avoidable admissions to hospital or residential placements which prove incredibly disruptive, and sometimes damaging, to individuals, their carers’ and families, as well as wasteful in terms of resource allocation.
The Care Quality Commission (CQC) first expressed their concerns regarding unacceptable standards of care provision in individuals own homes in their State of Care report published in 2012. Whilst CQC was able to report on significant improvements within provision in a subsequent report on home care provision in 2013, ‘Not just a number’, it found some care still fell below the standards those who use services have a right to expect, especially for those individuals with complex needs and dementia. CQC (2013) has identified issues related to a lack of skills and knowledge by staff, particularly around dementia and ‘concerns relating to safeguarding people who use services from abuse’ (p.5).
For example an overview of the returns from 15 local authorities in the South West on the Abuse of Vulnerable Adults (AVA, 2012) suggest that anything between 3.1% and 29.4% of all referrals are for people with dementia. However, the accuracy of these figures is called into question with a suggestion the wide disparity could indicate discrepancies in the recording of data, i.e. the person is identified as having mental health needs but the sub set of “dementia” has not been used. Figures from AVA also suggest anything between 26% – 51% of abuse occurs in an individuals’ own home where primary perpetrators of abuse can be social care staff, ranging from 0.5% – 54.3% and/or partners or family members who represent 8.9% – 44.1% of perpetrators. Whilst the large discrepancies’ in some of these figures can be attributed to methods of recording other research findings do consistently highlight the same groups of individuals as primary perpetrators.
Research undertaken by Cooper et al (2009) indicated that around half of the family carers’ for those with dementia involved in the study reported having been abusive in some way within the last three months. Reasons for such abuse can be complicated, sometimes it is unintentional and actions may be the result of carer stress and isolation or carers own physical and mental vulnerability, whilst, harm can sometimes be intentional. Whatever the cause the effect on the individual with dementia will result in poor outcomes. The consequences of poor, and abusive, care at home for those whose lives are touched by dementia is not only emotionally detrimental but can also be detrimental to their overall physical and mental health, as well as wasteful in terms of the allocation of scarce resources.
Research into care at home suggests many patients with dementia who are dependent on informal carers’ and family are often the group who end up with inappropriate hospital admissions resulting in costly care (Healthcare at Home, 2011). This research focused on developing understanding of out of hospital dementia care by considering what works and what does not work. It found good professional support services for those living at home were the preferred option by both users and providers of services, identifying four key areas of focus in the organisation and delivery of dementia care at home
1) Workforce organisation, configuration and support
2) Continuity of access and expertise
3) Hospital/residential home admission prevention initiatives
4) Socialisation and support in day to day life (Healthcare at Home, 2011)
These findings are consistent with the national overview of home care provision undertaken by the Care Quality Commission (2013) which identified concerns related to the lack of continuity of care workers, task focused care rather than person centred, how providers supported their staff to work with individuals with dementia, organisational practices in terms of Rota’s and time management, the monitoring of quality and the provision of adequate information to enable carers’ to recognise individuals and families preferences and choices to support them in living life the way they want.
Research by KPMG International (2012) suggests care processes have become imprisoned in the wrong physical infrastructure where health and social care systems swamp existing provision designed for the last century which are not fit to meet the demographic care challenges of the 21st century. Whilst we currently have a strategy to change the structure of service provision via self-directed support, personal budgets and personalisation it is unclear how successful these are. Research from Slasberg et al (2013) suggests self-directed support is failing to deliver either personal budgets or personalisation stating ‘However, it is even more serious than that as it is becoming increasingly evident that it is causing significant damage. This is not only in terms of wasted resources through the growth in bureaucracy that has no value, but also in terms of driving further wedges between practitioners and services users’ (p.103).
The importance of the relationship between those who use services and professional staff is evident in KPMG International’s research. They suggest employee costs are often an easy target for cuts when budgets are tight, however, evidence suggest such an unsophisticated approach to cost cutting actually increases costs in the longer term (KPMG International, 2012) as remaining staff become demoralised as they recognise the care they are providing is actually below standard.
This is highlighted in CQC’s national overview of home care services when they identify care provision has fallen below standard stating ‘What is concerning is that our findings come as no surprise to people, their families and carers’, care workers and providers themselves…’ (2013, p.2). Of equal concern is how do those professionals who may feel disempowered by the current system work with service users and patients to support their empowerment?
There is discontent within dementia services from both those who receive services and those who deliver services, and clear evidence of a link between the well-being of staff and organisational performance (Boorman, 2009).
The simple fact is standards of care are raised when carers, whether formal or informal, feel valued, cared for and supported.