Recognising the individual to promote dignity in care

Maintaining identity as part of dignity

Everyone experiences changes to their sense of personal identity at times in their lives. Some of these changes can be difficult and painful; for new parents, for example, or at retirement, divorce or when losing a partner. Apart from the obvious loss of freedom, income or companionship, we may feel that our identity has shifted in a way that somehow downgrades us in the outside world.

The ways in which institutions of all kinds – hospitals, schools, prisons, armies – can attack or even destroy our individual sense of self has been well researched.

Individual self-esteem can be attacked very simply by assigning us to a group identity that carries stigma: ‘old people’, ‘patients’, ‘people with disabilities’ or with ‘mental health problems’. Recently it has been found that even a diagnosis of ‘frailty’ may attack a person’s self-esteem so that they feel bound to act and feel ‘frail’ (Warmoth et al. 2016)

The ‘little things’

In one study undertaken by Glasgow University, older people interviewed in a variety of care settings also identified the ‘little’ ways in which their personal status and individuality was not recognised.

I feel sometimes when we talk about dignity we look at the big things but I think it’s addressing people, addressing your patients like 'good morning Mr Smith, how are you today?' or 'Can I help you with something?'. To me that is treating the patient with dignity. I don’t know if that is too simplistic…just to not acknowledge them.

Kinnear D et al. 2014

In one study undertaken by Glasgow University, older people interviewed in a variety of care settings also identified the ‘little’ ways in which their personal status and individuality was not recognised.

Getting the so-called ‘little things’ right is absolutely basic to treating a person as an individual who has a right to respect. It’s not always easy – here are three obvious, everyday examples.

• Form of addressOpen

  People don’t have just one name in their lives. Keith was always called ‘Tom’ at home (from his middle name), and this is still used by close friends. But years of teaching have made him more comfortable with a formal address: ‘Mr Collins’. The staff who support need to know this.

  Terms like 'love', 'darling' or 'dear' can be perceived as patronising and can make people feel very uncomfortable.

  There may well be people with names that are unusual to you: taking the trouble to pronounce a person’s name correctly will promote dignity and respect. Think about how it would feel if someone repeatedly said your name wrongly.

• ClothesOpen

  People living in residential care are sometimes dressed in clothes that belong to someone else. The recent Healthwatch report records a case like this: ‘my laundry is not always returned, and is worn by others, though it does turn up eventually’. Dressing people in others’ clothes is always ‘de-personalising’.

  The links between clothes and identity are very clear – think of class, gender and age. A person’s identity as a member of an ethnic minority or faith group may be expressed through the clothes they are culturally bound to wear, prefer to wear or are used to wearing. There is evidence that the link may be especially important to people with dementia, (see e.g. Twigg and Buse 2013).

• Food Open

  Serving nutritious and appetising food is of course vital to promoting health and wellbeing. It can also have important effect on a person's self-esteem – their sense of being listened to and being treated with respect.

  How food is prepared and presented matters to people. Taking care to get it right and to meet individual tastes contributes to a sense that ‘diners’ are treated with respect. Adults using social care services are diverse, and becoming more so. Mealtimes that recognise this can promote a sense of wellbeing and inclusion; or they can undermine and exclude.

The memory of the individual

Remembering your life history is an important part of your identity. Where people are at risk of losing their personal story, treating them with dignity involves supporting them in maintaining and celebrating it.

I had no idea then just how much I would come to rely on the photographs, that I would develop a disease that would steal memories from me, that every day something more cherished than any of my possessions would be lost. That’s what Alzheimer’s does: it’s a thief in the night, stealing precious pictures from our lives while we sleep.

‘Somebody I used to know’, a memoir of living with young onset dementia, by Wendy Mitchell, with Anna Wharton, Bloomsbury 2018

How life stories are lost

‘Life story work’ has been a familiar part of social care with children and adults since at least the 1960s. This century, in combination with other ‘reminiscence’ therapies, it has become more and more significant in the care of people living with dementia.

I’m a different me today from the one I was six months ago. A different one from the one I was a year ago. I’m losing my sense of self, and that is more frightening than anything.

‘Somebody I used to know’, a memoir of living with young onset dementia, by Wendy Mitchell, with Anna Wharton, Bloomsbury 2018

Think about ways and places in which people become more likely to lose their personal stories, or find them fading:

Social care agencies have developed a number of new approaches to reminiscence, stimulated by the needs of people living with dementia, and their carers.

Case studies

• Age Exchange BlackheathOpen

  Age Exchange Blackheath runs a community hub in south-east London offering a broad range of training and support for people with dementia and their carers. Their Reminiscence Arts in Dementia Care model combines reminiscence techniques and the arts. Activities in the hub and in the community are supported by a large group of trained volunteers.

• AliveOpen

  Alive is a Bristol-based charity dedicated to improving the quality of life for older people in care through meaningful activity. The activities offer opportunities to residents, including those with dementia, to share elements of their life histories and to explore their personal identity, knowledge and skills through creative activity and shared interaction with others. ‘We enable older people to shape the content and direction of Alive sessions, which include the use of new technology, guided reminiscence, creative, energising and physical activities.’

• AnchorOpen

  Anchor has introduced iPads to 63 of its care homes across the country. ‘We are finding that using iPads is a great way of helping capture our residents’ living stories.’ The use of iPads in reminiscence work is an integral part of the Anchor Inspires programme for residents with dementia.

Recognising difference in dignity

What the CQC says about equality and human rights

When we inspect services, we take into account how they consider your:

• age
• disability
• gender
• gender identity
• race
• religion or belief
• sexual orientation (whether you are lesbian, gay, bisexual or heterosexual)
• pregnancy and maternity status

Thinking about the services you provide, consider how you would meet the needs of the people described above.

• Are their gaps?
• What more is needed?
• Is there a need for a different approach?

Equality and human rights (CQC, 2019)

 Case studies

• SyedaOpen

  Syeda was born 40 years ago in Bangladesh with multiple physical and learning disabilities. She is now in need of constant nursing care. Her extended family is very unwilling to agree to her admission to a nursing home. They say they have had bad experiences of health care in the UK, and fear her cultural and religious needs will be ignored.

• DeborahOpen

  Deborah, a transwoman aged 49, was diagnosed with dementia five years ago. Her son is aware that a care home may soon be a necessary option, but knows that Deborah is afraid of the reactions of staff and other residents. This fear is based on experience.

• SimonOpen

  Simon is dying of cancer, and it has been suggested that he would be more comfortable in a hospice. But he and his family need to be certain that their Jewish faith and approach to death will be respected in his last months.

• GaryOpen

  Gary is a young, gay man with physical disabilities. He has an active social life in the area where he lives. But now he needs a higher level of care, in supported accommodation. He worries about maintaining his lifestyle, and the contacts with the local LGBT (lesbian, gay, bisexual and transgender) community, which are important to him.

Standard provision for everybody and treating everyone the same does not promote equality. Instead, every kind of adult social service has to come to terms with and meet the needs of a changed, diverse population. This includes people of many races and ethnicities, any gender or gender orientation, every sexual orientation and many faiths.

It shouldn’t need to be said that all people have an equal right to inclusive, dignified care tailored to their personal and cultural needs.

Finally

Respect and support for every person’s individual identity and history is essential to treating them with dignity. Personalisation, wellbeing and equality support this. This section has shown:

• how identity can be undermined
• the importance of so-called ‘little things’ to maintaining self-esteem
• how personal history can be lost, or supported and celebrated
• the place of memory and reminiscence in preserving our identities, and
• the critical importance of recognising and respecting increasing diversity in our society.