Health and social care support for people with dementia

What is the impact of health inequalities for people with dementia?

The challenges described throughout our report highlight some of the ways that people with dementia can have a poorer experience of health and care.

Key stakeholders we engaged with for this strategy told us inequality was a root cause of issues facing people living with dementia. Persistent misunderstandings and stigma associated with dementia can lead to inequalities in how care is delivered and commissioned. They said health inequalities prevail from prevention right through to people’s experience of living with the condition. 

These inequalities are discussed in an Office of Health Economics review. This suggests that there are more than 100 inequalities that have an impact on people with dementia and their carers. Issues identified include location, deprivation, socioeconomic status, age, culture, ethnicity, and access to and experience of diagnosis and healthcare.

Some of these findings are reflected in the 2023 Adult inpatient survey for example, which found that people with dementia or Alzheimer’s reported poorer experiences for almost all questions. This included:

• being more likely to feel they were not treated with sufficient respect and dignity
• feeling less involved in their care
• being less likely to feel hospital staff took their individual needs into account.

Analysis of Give feedback on care comments showed there were some potential risks to people being treated as individuals and to equity in access, experience and outcomes – for example, in terms of access to GPs: 

I can’t organise my thoughts well enough to do telephone calls and can't usually remember the outcome. No thought is given to the needs of people with dementia, for example I can't use the e-consult or the electronic system for booking appointments.

Combined impact of dementia and other protected characteristics

We commissioned research, Rapid literature review: inequalities in dementia, to identify why some people with dementia get better care than others in care homes.

The research concluded that when a person has dementia, health and care providers and staff should be aware of a number of considerations that ‘intersect’ or have a combined impact with each other. This includes needs related to another protected characteristic under the Equality Act 2010, such as other disabilities, ethnicity and sexual orientation. For example:

• Previous negative experiences of stereotyping or discrimination from health and care services may be re-lived, particularly as a person’s dementia progresses, which can result in anxiety, mistrust and poor engagement. 
• A person who loses cognitive function through dementia may be confused about their gender identity, feel they need to hide their sexual orientation, lose English language skills (where it may not be their first language) or use non-verbal behaviour that is specific to their culture, community or previously learned coping strategies.

Despite the importance of being aware of these intersections, analysis from our provider information return indicates that providers do not always consider the combined impact of dementia and other protected characteristics. Answers to the question about what adult social care services have done to meet the needs of people with protected characteristics were generally of poor quality. Dementia was acknowledged as a ‘disability’ and addressed in terms of ensuring accessibility. However, any intersection with other protected characteristics was rarely acknowledged, other than to mention available equality and diversity training and support to access places of worship. There were few person-centred examples that addressed any intersectionality, especially with ‘race’ and ‘sexual orientation’.

Our Culturally appropriate care resource contains examples and good practice to help care providers think about different ways people’s culture might affect the way they wish to receive their care and support.

How are providers and systems tackling inequalities?

This report highlights some of the ways that services are trying to address the health and wellbeing inequalities experienced by people with dementia in using health and care.

A fundamental finding from our Dementia Strategy work so far is that good quality care needs to be personalised to meet the needs of people with dementia from equality groups protected under the Equality Act (2010) – one size does not fit all. 

To do this well, staff need to have the time and space to have early and regular conversations with people using the service as well as their family and those closest to them. This enables people to be better understood when staff have the courage and confidence to ask sensitive and complex questions, and to not assume certain needs, likes or dislikes based on personal characteristics. 

Person-centred care plans are particularly powerful when supported by thorough and balanced risk assessments, which have the needs of the individual at the core and support their fundamental human rights. This approach requires collaboration between the person with dementia, family members and staff.

While we acknowledge above that it is an area of limited awareness, some providers are acknowledging the combined impact of dementia and protected equality characteristics, such as disability, ethnicity and LGBT+, and responding to people’s needs. 

Our inspection reports of outstanding adult social care services highlight how some providers have been sensitive to the cultural needs and traditions of the people they cared for. For example, because people with dementia can lose interest in food, potentially leading to weight loss and increased frailty, the following extract shows how respecting the culture and preferences of a person with dementia can support them to eat well.

Extract from a CQC inspection report:

Staff ensured people were able to follow culture and traditions that were important to them. For example, the home's head chef worked closely with a person and their family to develop a personalised menu, which reflected the person's Hindu culture and beliefs. The head chef accompanied the person and their family to a local Indian food shop where the person chose their preferred vegetables and spices for inclusion on their menu.

Care staff who can culturally connect with the people they care for can be of vital importance to overcome communication issues, and potential barriers to equality, brought on by dementia. Through our analysis of provider information returns we found, for example, either a member of staff would learn expressions from someone’s preferred or first language or a care worker would be provided that had a connection to a person’s cultural background.

Adult social care provider information return:

We have a lady who is Welsh (she has dementia). We have worked closely with her family to learn some key Welsh words and phrases as she primarily speaks English, but will revert to Welsh if agitated or tired. This ensures the staff can communicate effectively with her.

In relation to culture and beliefs, in a few adult social care provider information returns, providers acknowledged the impact dementia can have on practicing a religion or faith. These providers recognised that a person-centred care approach was needed to ensure that religious beliefs continue to be respected, despite dementia impairing the ability of a person to always remember or practice their faith. 

Adult social care provider information return:

Staff respect the wishes of the resident’s specific religious beliefs. An example is a resident who was a Jehovah witness but had dementia so forgot at times his beliefs. Staff made sure his needs were met by not involving him in Christmas activities and his family were very grateful for this.

Providers have also told us about how they consider the intersections between dementia and other protected characteristics in the education of their staff. For example, we heard about toolkits to support people with dementia from ethnic minority groups. Care homes and homecare providers commonly reported attending specialist LGBT+ dementia training and workshops.

Adult social care provider information returns: