In November 2016, the Alzheimer’s Society released the third in a series of investigative reports on the experience of people affected by dementia in a range of health and care settings. Following a first report on hospitals and a second on care homes, the third in the ‘Fix Dementia Care’ campaign focuses on homecare. It reveals some alarming instances of unsafe and harmful care, and makes recommendations centred predominantly on training.

Findings in the Fix Dementia Care: Homecare report are based on a survey of 1,227 people affected by dementia, another of 739 homecare workers carried out in partnership with Unison, further research commissioned through Skills for Care, and 119 Freedom of Information responses from councils in England.

Survey respondents expressed concerns about people with dementia not being treated with dignity. People with dementia and their families told of experiences where people had been left in soiled clothing, where medication had been missed, urinary tract infections overlooked or dehydration untreated.

Other concerns were in the area of communication and interaction, with nearly half of the people affected by dementia saying that homecare workers would address the family member present rather than the person with dementia. Some described incidents of the person with dementia being treated like a child or ignored.

Rather than stemming from deliberate cruelty or disregard for a person’s welfare, the findings indicate that incidents like those described are almost always a result of inadequate training. According to the research, 38% of homecare workers receive no dementia training at all, and 71% don’t receive dementia training that is accredited. Only 2% of people affected by dementia said that homecare workers have enough dementia training, with 49% disagreeing that homecare workers understand the specific needs of people with dementia.

“Homecare workers delivering care in the community need to understand the specific complexities of dementia, and be equipped through appropriate training to know how best to respond, just as we would expect NHS professionals providing care for diabetes or cancer to understand the disease.”

People with dementia and their families are not alone, however, in wanting better dementia training for homecare workers. It’s important to acknowledge that in the large majority of cases homecare professionals themselves want to be delivering high quality care and would welcome better training in order to do so. In fact, 87% of homecare professionals agreed or strongly agreed that further training would help them react to different challenging scenarios when providing dementia care and support. The report uncovered “a strong connection between the problems people affected by dementia experienced, and the anxieties held by homecare workers around providing care”.

It’s easy to imagine how being tasked with delivering care to vulnerable individuals without the necessary level of training could be daunting – particularly when a lack of understanding might lead to being on the receiving end of challenging or even violent behaviour. The Alzheimer’s Society says “Homecare professionals themselves told us they were often fearful – in most cases this was because they felt unprepared on how to support people with dementia.”

The report points out that, when a homecare worker receives only minimal training or no training at all, a vicious circle can arise where fear itself produces frightening results. Care workers can be “too afraid to try and develop a genuine connection, or to ease an escalating situation, for fear of doing something wrong”, and in turn “this can lead to an approach that exasperates, frustrates or dehumanises the person with dementia". In some cases, care workers surveyed told of how their inability to know how to diffuse a situation meant they faced verbal and physical violence.

Other areas where homecare workers expressed feelings of helplessness were how to assist people with changes that occur as the condition progresses, how to include the person’s family effectively in the planning and provision of care and support, and challenges closely linked to dementia such as self-neglect and depression.

“[Training] can be a significant factor in providing confidence to homecare workers operating in a challenging environment, increasing their sense of worth and appreciation, encouraging career progression and assisting with recruitment and retention.”

The Alzheimer’s Society fairly states that, “Homecare workers delivering care in the community need to understand the specific complexities of dementia, and be equipped through appropriate training to know how best to respond, just as we would expect NHS professionals providing care for diabetes or cancer to understand the disease.”

In its recommendations for how to better equip the workforce, it calls for dementia training for the Care Certificate to be raised from ‘Dementia awareness’ only, which is the one subject in tier 1 of the Dementia Core Skills Education and Training Framework, to also include the subjects in tier 2:

  • Dementia identification, assessment and diagnosis
  • Dementia risk reduction and prevention
  • Person-centred dementia care
  • Communication, interaction and behaviour in dementia care
  • Health and well-being in dementia care
  • Pharmacological interventions in dementia care
  • Living well with dementia and promoting independence
  • Families and carers as partners in dementia care
  • Equality diversity and inclusion in dementia care
  • Law, ethics and safeguarding in dementia care
  • End of life dementia care
  • Research and evidence-based practice in dementia care

Beyond the clear benefit to the person living with dementia, a higher standard of training can also significantly improve quality of life for the carer, and in turn reward the employer. As the report states: “it can be a significant factor in providing confidence to homecare workers operating in a challenging environment, increasing their sense of worth and appreciation, encouraging career progression and assisting with recruitment and retention”.

"We must unlock the potential of homecare as a powerful ally of the NHS, providing assistance to keep people where they want to be and helping to manage long-term conditions like dementia in the home."

In 2014, the Five Year Forward View set out a direction for the NHS for dissolving traditional boundaries of health and social care to create a more seamless care continuum, and integrating services around the individual for more person-centred care. Central to this strategy is that a higher proportion of care and support be delivered in the community. Training is the key to making this possible.

It’s estimated that, at any one time, upwards of a quarter of hospital beds are occupied by a person with dementia, many of whom says the Alzheimer’s Society, “have been admitted due to a preventable crisis”. This is a situation which, if unresolved, will only be exacerbated by the increasing pressures of the ageing population. By up-skilling the homecare workforce to deliver a higher standard of care in the community, the rate of preventable admissions will fall, freeing up beds, creating significant savings for the NHS and, most crucially, improving quality of life for people affected by dementia.

As is stated in the ‘Fix Dementia Care: Homecare’ report: “We must unlock the potential of homecare as a powerful ally of the NHS, providing assistance to keep people where they want to be and helping to manage long-term conditions like dementia in the home”. In doing so, it will be possible to deliver "the principles of wellbeing, choice and control for people affected by dementia that are so prominent within the Care Act 2014”.

Do you wish to provide a higher standard of dementia training for your staff? Until the end of March 2017, Relias UK is offering its full e-learning library for the Dementia Core Skills Education and Training Framework (tiers 1,2,3) free of charge to organisations purchasing the standard health and social care library. The standard library includes training for the Care Certificate, all statutory/mandatory training, and a range of clinical courses. For further information call 0800 975 2941, or request a demo using the form below.