Involvement and inclusion promoting dignity in care

We know that people’s dignity depends on the knowledge that they are full citizens: with rights to privacy when they want it, support when they need it, and opportunities to take part in the life of the community.

The SCIE video looks at people doing everyday things like catching the bus or socialising with friends. In practice, social inclusion means promoting and supporting these activities by improving access to the community and social networks.

This section is about social isolation and social exclusion, and their impact on a person’s dignity. In short, it’s about relationships:

  • Relationships between staff and people who use services, and their families and carers.
  • Continuing contact with partners, relatives, friends and neighbours.
  • Support with maintaining former interests and activities, as well as finding new ones.

Messages for practice

  • Many older and disabled people are at risk of becoming socially isolated.
  • People should be involved in all aspects of daily living so that they can live ordinary and fulfilling lives.
  • People should be supported to become active members of the community.
  • Care staff should support people to develop and maintain social networks.

Resilience and connectedness

Research has repeatedly shown that wellbeing and resilience – the capacity to survive an accident, or crisis, or plain bad luck – depend a lot on ‘social connectedness’ (see e.g. ‘The anatomy of resilience’, Social Services Improvement Agency, 2015).

‘Connectedness’ refers to being involved with other people, the local community, ordinary life and stimulating experience. It supports a person’s independence, dignity and self-respect. It doesn’t matter what kind of adult care setting or service we are talking about; the best ones remove the barriers between the service and the life going on outside. At the same time, they make sure that there are no barriers inside the service, holding people back. They don’t confuse privacy with isolation, or independence with neglect or unreasonable expectations.

Loneliness

We all know that loneliness can be a serious problem for people who have too little support and company as they grow older. In 2018 Age UK calculated from current figures that by 2026 the number of older people in England who are often lonely will increase to 2 million (‘All the lonely people: Loneliness in later life’ (Age UK 2018).

Loneliness can hit at any age. Any kind of loss or personal crisis can lead to isolation. Stigma, discrimination or any kind of exclusion can make this worse. Fear of the future, of loss of control, of strange surroundings or new people may all increase a person’s sense of being alone.

Exclusion and risk

Research shows that there is no automatic connection between independence and wellbeing. The goals of personalisation depend on care-based awareness, understanding and empathy with the individual’s need for relationships. The SCIE video shows how important relationships with care staff are to building the confidence and independence of people using services.

Messages for practice

  • Practical assistance can help people to maintain independence and dignity.
  • Help with small tasks can prevent people from needing a higher level of care.
  • Helping people to look after their home and garden can reduce the potential for abuse to occur.
  • Helping people to maintain links in the community can promote dignity and reduce social isolation.

Personal stories

Click on each drop-down to read about each person’s experience.

Gary, who has physical and learning disabilities, wants to spend Saturday evening meeting his friends at a bar in town. He is told by his key worker that he cannot travel there alone, and there is no one free to help him.

Barbara is a fit and lively woman of 82. She wants to attend an evening class in mathematics. The staff at the care home think the late bus home will be too much for her, and suggest in-house craft activities instead.

Attending Friday prayers at the local mosque is an overriding priority for Mo. He gets very frustrated when there is no one available to push him there in his chair from the nursing home.

Daphne used to be a keen swimmer. She has found out that there is a local pool near the care home which holds weekly classes for older people. But she is firmly discouraged from going on health grounds: the water would be too cold for someone her age (95).

Over to you

All of the people from the above examples are making reasonable requests – and in the real world there is a solution to them all. Take a moment to consider each person in turn, and list the issues they raise that are relevant to that person’s dignity.

If funding or staffing levels prevent people living as they wish, what are the options?

  • Requesting a review or care assessment to ensure that the person’s wellbeing is being promoted.
  • Supporting the person to access local voluntary services for additional support.
  • Asking the person if they have family or friends who may be willing to support them.
  • Ensuring the person has appropriate access to advocacy.
  • Income maximisation – ensuring the person is receiving all entitlements.

The charity brap highlights that when we assume a resident can’t think or do something independently, we risk leading to ‘an infringement of their human right’ (Right in roles: resource pack: resident engagement).

We looked at positive approaches to risk more thoroughly in Freedom to choose/Free to take risks. The point here is that the argument that an activity may potentially be too ‘risky’ should never be used thoughtlessly: it can so easily be a barrier to choice and independence.

Activities, interests and ambitions

It is important that older people in care homes have the opportunity to take part in activity, including activities of daily living, that helps to maintain or improve their health and mental wellbeing. They should be encouraged to take an active role in choosing and defining activities that are meaningful to them. Whenever possible, and if the person wishes, family, friends and carers should be involved in these activities. This will help to ensure that activity is meaningful and that relationships are developed and maintained.

NICE 2013

For many years, public policy has made the value of ‘meaningful’ or ‘quality’ activity to people using social care services very clear, particularly, but not only, to those in residential settings. In 2013, for example, the National Institute for Health and Care Excellence (NICE) published a quality standard which laid down what kind of activity a good care home would offer older residents.

Activities, in this context, were aimed at supporting people’s mental and physical heath. But the debates about wellbeing, and person-centred care, have clarified and extended this. ‘Activities’, in adult social care services must support a person’s dignity – their:

  • self-awareness and self-respect
  • autonomy, choice and independence
  • connectedness, to their families, friends and networks, and to the wider community
  • ambitions for the rest of their life.

Healthwatch … was really impressed by the caring way in [which] staff at one care home for older women (including those with dementia) had used ‘I would if I could’ statements to find out about the desires and unfulfilled ambitions of their residents. Using this imaginative approach enabled them to make many of these things happen, ensuring residents are able to continue to ‘live their lives’ rather than merely exist.

What’s it like to live in a care home? (Healthwatch, 2017)

Meeting people’s expectations and ambitions

A large part of dignity in care is making sure we understand each individual’s specific needs and wants. In short, dignity in care means:

  • autonomy – making your own decisions including getting out when you want to
  • choice – a range of opportunities
  • retaining your personal history
  • identity
  • maintaining links to communities, families and friends.

Open Age is a charity established in London 1993 providing low-cost activities to enable older people (50+) to keep mentally and physically fit, stimulated and involved in their local communities by supporting them to discover new interests and develop new skills and friendships.

Its members and staff continue to play an important role in consultation on local and national policy issues relating to older people. Open Age aims to support social interaction and reduce loneliness, isolation and depression; it provides a drop-in information and a referral service and works in partnership with statutory and voluntary providers to maximise services and facilities available to older people in West London.

Open Age runs a number of hubs in Kensington, Chelsea and Westminster but also uses a range of low-cost or free community spaces to host its activities programme. Three of its hubs offer ‘Time for me’ carers support programmes aimed at unpaid carers of 50+, providing a range of social and educational activities and advice.

Designing an activities schedule

In the video you will hear Andrea Sutcliffe, CBE, talk about how an imaginative approach to the creative arts can enliven residential care services – for both residents and staff.

See the full Arts and care homes project.

Here are some examples of types of activity you can consider, and of the contexts for the various types suggested

Arts and crafts

Arts 4 Dementia develops arts programmes to empower, re-energise and inspire people with early-stage dementia and carers through challenging artistic stimulation, to help them live better for longer in their own homes.

Creative Minds is a social enterprise based in Guildford, Surrey, employing a community of artists and art students to deliver art sessions to care homes, day and community centres across the UK. It reaches nearly 1,000 older adults a year. Art sessions are designed to be very relaxing and stimulating for older adults, especially those who have an onset of dementia.

Sessions are devised and delivered to suit older adults of all capacities and capabilities to enable participants to explore their creativity with the guidance of an experienced artist.

Domestic tasks

We saw care homes where staff had made a real effort to engage with residents and help them take part in the same kind of activities as they would have at home … One home told us that a resident had enjoyed cleaning all her life, so assisted in small cleaning tasks, and washing cups.

What’s it like to live in a care home? (2017)

Leah is using a sharp knife to cut peppers and onions for the pizza. Another resident is adding parchment paper to the baking tray, on which the pizza will be baked. Marie helps him cut the paper. There is considerable chatter in the room, a very active, warm, home-like feel. Another resident, Fynn, walks from the table to the island where there is a bowl of fruit, and he takes an apple. One of the apprentices asks him if he wants it peeled and brings him a peeler.

Promising practices in long-term care, p. 47

Music, singing, dancing and fitness

Singing can lift spirits, but it can also do much more. There is now hard evidence to show that music participation can help those living with dementia to engage and remember; and more generally, alleviate the effects of breathing diseases, reduce stress and anxiety and build relationships between residents, carers and staff.

Launched in 2015, A choir in every care home is led by Live Music Now, Sound Sense and Canterbury Christ Church University and funded by the Baring Foundation. It is looking at how music and singing can be spread across every care home in the country. Care homes can start small and progress with support of the programme and a modest investment to becoming a ‘Singing Home’ offering a wide range of musical activities including visits from professional musicians, performances by local choirs, church services, Christmas concerts and planned singing activities using CDs or iPads.

Music in everyday life injects music into everyday routines and special events on the unit. One aspect of this is a list of music that is well-loved by each resident that is composed by staff, family and the resident (where possible). The list is posted by each bedside along with taped or DVD recordings of the music. The staff members sing bits or all of the songs, generally with the residents, during regular care routines.

We frequently saw staff and residents singing a verse or two of a song, and sometimes holding hands or dancing together in the hallways while they did it. Much loved music is also used individually and with groups of residents to get them up and dancing at various points in the week – a rewarding form of socialisation and exercise. Even people who are rarely verbal seem to love to dance to their favourite tune.

Promising practices in long-term care, p. 58

Residents show many signs of positive engagement – during a fitness class, for example.

Residents enjoy a lot of independence and are free to wander and handle the many objects lying around. Many seem to enjoy the stimulating environment.

Promising practices in long-term care, p. 64

Books and learning

The Exeter Care Homes Reading Project is about strengthening the connections between young and old in the local community, and making a difference in the daily lives of those living in residential care, and especially residents with dementia. Reading Project student volunteers are trained and sent out to a large number of care homes across Exeter. They visit residents regularly, reading poetry, plays and short stories, and simply spend time chatting.

Care Homes Reading Project

The University of the Third Age – a self-help education network for older people – has been developing ways of extending activity into care homes and reaching less-mobile participants since 2012. Instead of meeting in community halls or members’ homes, care home groups would largely meet online.

Anchor Housing provides housing and care for older people and has been promoting the benefits of reading groups for its residents for over a decade. A growing number of care homes have become convinced of the benefits that libraries and reading groups can bring to residents including those with dementia. Some care homes like Mayflower Court in Southampton have created a small physical library in a communal room in the home and have weekly sessions run by a resident who is also a retired librarian.

Libraries in care homes can improve residents’ mood and memory (The Guardian)

Intergenerational work and technology

The Digital Bridges project in Bicester brought The Orders of St John Trust’s care home together with young people from local schools to help create memory and life story books for residents.

OYAP Trust

Tangible Memories is a project based on school children supporting digital storytelling. It has been undertaken by Tangible Memories with a local school using the StoryTeller app to create life stories for care home residents.

Gardens

In addition to the examples listed above, there are a wide range of imaginative ideas out there: projects providing drama and entertainment, or transport and company, based in community centres or hubs. There are also breakfast clubs and lunch clubs, and groups extending leisure activities across boundaries that could otherwise separate them from people who use adult social services.

For many more ideas, and guidance, see Arts in Care Homes.

In addition to the examples listed above, there are a wide range of imaginative ideas out there: projects providing drama and entertainment, or transport and company, based in community centres or hubs. There are also breakfast clubs and lunch clubs, and groups extending leisure activities across boundaries that could otherwise separate them from people who use adult social services.

For many more ideas, and guidance, see Arts in Care Homes.

Finally

Dignity and inclusion: the connection is clear. In this section we have seen that inclusion means:

  • being able to take part in everyday activities which most people regard as ‘normal’
  • relationships between people and with the community support self-respect, autonomy and resilience
  • protection from barriers to joining in, which are linked to outdated ideas of ‘risk’
  • that all the ways of excluding people derived from stereotypes, fear of ‘difference’, racism and ignorance about rights to equality are recognised and shunned.

The section ended with examples of the many different ways on which providers are supporting inclusion and involvement through ‘meaningful activity’ in the community.

Further reading