Formal care of people with dementia

1. Summary

In many cases, people with dementia use formal care. Formal care is provided by paid health and social care staff in care homes, hospitals and at home. Alzheimer's Society calls for formal care of people with dementia to meet the following principles:

  • Provided by dementia-trained staff who have access to specialist support
  • Focused on meeting needs and aspirations
  • Promotes dignity, respect and maintains human rights
  • Integrated

The importance of good quality care services is highlighted in dementia strategies and action plans in England, Wales and Northern Ireland. However, there is currently unacceptable variation in the quality of formal care provided to people with dementia.

Ensuring people with dementia receive high quality care, provided by trained staff, is essential to meeting the challenge of dementia. Inadequate or poor care reduces quality of life, leads to higher overall care costs through early admissions to care homes and avoidable admissions to hospital and impacts on the physical and mental health of carers.

Regulators and government inquiries have recognised that, in too many cases, care for people with dementia is poor.The CQC has found that that the quality of care for people with dementia is variable in care homes and hospitals, people with dementia are likely to experience poor care and this has a negative impact (CQC, 2014). The CQC recommends that strong action is needed to improve the quality of care. In terms of home care, 50% of carers and people with dementia told Alzheimer’s Society that they, or the person they care for, did not receive sufficient support (Alzheimer’s Society, 2011).

Providers of formal care often neglect measures to promote quality of life. Alzheimer's Society found a lack of activities and other measures to promote quality of life for residents. Only 44% of carers and people with dementia told Alzheimer’s Society that care home activities were good (Alzheimer’s Society, 2011).

2. What Alzheimer’s Society calls for:

  • Care provided by dementia-trained staff who have access to specialist support. People with dementia have specific needs. These can include problems with communication and behavioural and psychological symptoms of dementia (BPSD) such as aggression, agitation, loss of inhibitions and psychosis (delusions and hallucinations). It is vital that staff are trained to understand how to communicate with people with dementia and respond to BPSD. However, training levels are low. In social care, a small proportion of staff receive dementia care training, even among specialist dementia services (APPG on Dementia, 2009). In hospitals, over half of nurses said they had not received dementia training (Alzheimer's Society, 2009). Finally, in terms of care provided at home, 40% of home care workers told Alzheimer’s Society that they had not received enough training (Alzheimer’s Society, 2011). Alzheimer's Society calls for staff providing formal care to people with dementia to receive dementia-training and commissioners to ensure that care staff have access to specialist support.
  • Care focused on meeting needs and aspirations. People with dementia have needs and aspirations and can express opinions about quality of life at every stage of the disease (Alzheimer’s Society, 2010). Alzheimer’s Society research has found that independence, being able to remain at home and maintaining good quality of life are priorities for people with dementia and carers (Alzheimer’s Society, 2011). In care homes, people with dementia need support and regular opportunities to remain active and engaged. However, only 44% of carers and people with dementia told Alzheimer’s Society that care home activities were good (Alzheimer’s Society, 2011). Alzheimer’s Society calls for holistic care plans that address people with dementia's aspirations and needs and involve people with dementia and carers.
  • Care that promotes dignity, respect and maintains human rights. People with dementia can experience problems with communication and behavioural and psychological symptoms of dementia. Staff, in particular those who are not trained to understand how to communicate with people with dementia and respond to BPSD, can provide care that cases breaches fundamental human rights and fails to treat people with dementia with dignity and respect. Over a third of people with dementia and carers told Alzheimer’s Society that they, or the person they cared for, were not being treated with dignity and respect (Alzheimer’s Society, 2009). This can include inappropriate prescription of antipsychotic drugs, inappropriate use of restraint and inadequate nutrition and hydration. Alzheimer’s Society calls for formal care that promotes dignity and respect, is based around the Mental Capacity and Human Rights Acts and involves people with dementia and carers.
  • Care that is integrated. People with dementia receive formal care from a range of health and social care services. This is as a result of the complexity of the condition which combines features of chronic neurological disease, mental illness and physical frailty. Integrated care is, as a result, essential to people with dementia. It improves outcomes for dementia and, in addition, saves money (APPG on Dementia, 2011). However, successive reports and reviews have identified divisions between health and social care. Only a quarter of people with dementia and carers told the Alzheimer's Society that the services they received worked well together (Alzheimer’s Society, 2009). To achieve this, care plans for people with dementia should be based on an individual’s needs, rather than organisational or services boundaries, and services commissioned jointly by health and social care with the involvement of people with dementia. In addition, Alzheimer’s Society calls for people with dementia to have access to dementia advisers to guide them through the system.