This research looks at good practice in health and social care services when caring for people living with a type of dementia.
We commissioned IFF Research to carry out this research, in partnership with Leeds Beckett University. They wrote the full report, which is below this summary.
Why it matters
As we reported last year in Health and social care support for people with dementia, this research highlights that the number of people with dementia is expected to grow in the coming decades. As more people get dementia, health and social care services, such as care homes, hospitals and GPs, will face more pressure. This means that providing good quality care for those living with dementia is very important.
The approach used
IFF Research reviewed good practice in supporting people with dementia from UK and worldwide universities and organisations in health and social care. The review also included 3 discussion groups with experts, other regulators of health and social care, and people with lived experience of dementia or caring for someone with dementia.
Findings
Person-led care – what good looks like and how to achieve it
Person-led care recognises people with dementia as individuals and enables them to shape and lead their own care:
- Care plans should be made together with people with dementia and their carers and families, not for them.
- Social interaction and structured, meaningful, and inclusive activities not only support wellbeing but also reduce symptoms of dementia. Activities were often framed around daily life tasks and exercising hand-eye coordination, for example.
- Opportunities to feel part of a community enabled people to continue exercising choice and control in their lives. Recognising family and carers as partners in care is central to this.
- ‘Peer support approaches’, which happen when people with similar long-term conditions or health experiences come together to support each other, can reduce feelings of isolation, challenge stigma, and promote wellbeing.
- Supporting people to keep doing things that were important to them in smaller-scale, homelike settings helped maintain a strong sense of ‘home’.
- Training staff to communicate well, including using body language and non-verbal cues, is important – otherwise, staff could unintentionally undermine someone with dementia. Staff want guidance and training on this too.
Equalities and human rights – what good looks like and how to achieve it
Care for those living with dementia and their families and carers must respect people’s different backgrounds and identities, and their rights:
- Access to care for people with dementia can be improved by using online tools, such as video calls – especially when living in rural areas. Building staff confidence to support this is essential.
- The quality of care for people with dementia improved when care providers understood their cultural backgrounds – for example, food is a key factor that affects people’s experience. People benefit from a workforce that reflects the demographics of local communities, such as people’s ethnicity.
- Where possible, respecting people’s preferences to be supported by someone who can speak their first language and relate culturally helps maintain trust, identity, and a sense of belonging.
- Local community support groups can provide an accepting space for people to talk about dementia – especially people with protected characteristics, such as sexual orientation and religion, who may feel more comfortable around people with dementia who are similar to them.
- Good practice involves careful consideration of the balance between keeping people safe and free from harm, while respecting their privacy and freedom.
Staffing and training – what good looks like and how to achieve it
Having staff who know about dementia and how to provide proactive support is important for good dementia care:
- Although there is currently no legal requirement for all health and care staff to undertake dementia training in England, providers are required to ensure that staff are suitably qualified, trained and skilled to meet the needs of the people using the service.
- Implementing dementia training benefitted from considering the capacity of staff, such as scheduling sessions during less busy times of the day.
- Using a ‘train-the-trainer model’ can also support effective dementia training, where some staff receive more in-depth training and train other staff.
Leadership and culture – what good looks like and how to achieve it
A good leader sets a good example, listens to others, and invests in their staff, and a positive culture makes everyone feel included and respected:
- Quality assurance tools, such as audits and performance reviews tools can help monitor care delivery and highlight areas for improvement, as can mechanisms to enable people living with dementia, families, and staff to provide feedback.
- Effective leaders promote flexibility in working practice and moving away from a task-based culture, empowering staff to take initiative and find solutions that meet the personal needs of people living with dementia.
- Different services working together across health, social care, community and voluntary sectors helps deliver more tailored, person-led care for people. Effective partnership working also requires that people living with dementia and their carers are meaningfully included in the design and delivery of services.
Read the full report
To read the full report visit IFF Research - Good practice in caring for people with dementia.