Better care for people living with dementia

The Social Care Institute for Excellence’s  Dementia Gateway , created with the Alzheimer’s Society, is an online resource for carers and professionals living and working with people with dementia. It offers tips, tools and activities to help them meet their challenges

The Dementia Gateway demonstrates that supporting a person who has dementia to remain active and feel involved in life is not just an “add-on” to make people’s days enjoyable. Nor is it the job of an activity organiser or an entertainer, but is a key part of every staff member’s role. This is something that Mary’s care home does, by encouraging her to keep gardening, and giving her the opportunity to practise her faith.

Her care home has also tried to make personal care less stressful for residents by building the theme of reminiscence into the design of the bathroom. They have done this by decorating the bathroom with designs and features that will stir memories in the residents – for example one wall has beach decorations on it, so the residents remember holidays they took when they were younger.

As care home manager Andrea Thorpe says: “The residents with dementia are living mainly in the past. They’re not able to realise what day it is or what time of year it is, so reminiscence is very important because they’re able to talk about that as if it was yesterday. They can remember their childhood, they can remember what they did at work, and it encourages conversation.”

This approach to care is promoted in the environment section of the Dementia Gateway. It says:

• It is important to make the toilet or bathroom a safe and easy place for a person with dementia to use.
• The right design can help a person with dementia to maintain their independence and dignity over personal care.
• Going to the toilet or having a bath or shower should be, if not enjoyable, at least stress-free.

Thorpe agrees: “People who’ve got dementia are quite often aggressive and frightened by personal care, and so when we bring the residents in for their bath they’re usually distracted by the decoration. We can discuss days they had at the seaside when they were young children, or when their family was young.”

The Dementia Gateway addresses:

• Making decisions: In England and Wales the Mental Capacity Act covers all decisions people may make for themselves, however little or big, from deciding whether to have a bath or shower to selling a house. The law says we must start by assuming that people can make their own decisions. This includes people with dementia.
• Getting to know the person with dementia: Dementia can make it more difficult to communicate with others. As dementia progresses it becomes harder for a person to tell others about themselves and to understand what others are saying to them. This leads to people feeling cut off and isolated.
• Eating well: This is vital to maintain the health, independence and wellbeing of people with dementia. However, for many people with dementia, eating can become challenging as the condition progresses. Some lose their appetite or the skills needed to use cutlery, others struggle to chew and swallow.
• Difficult situations: Working with people with dementia can be very rewarding. But situations can arise that are difficult for the person with dementia or those supporting them – or both parties.
• Keeping active and occupied: Supporting a person who has dementia to remain active and still feel involved in life can be the key to maintaining quality of life even into the later stages of the illness. This is part of every person’s role, whether they are a home or day care worker, a nurse, a care assistant, or a manager.
• The environment: A safe, well designed living space is a key part of providing the best care for people with dementia. Good design can help people with dementia to be as independent as possible for as long as possible. It can also help to make up for impaired memory, learning and reasoning skills and can reduce stress levels.
• End-of-life care: Living well with dementia also includes supporting a person with dementia to die well, or as they would have wished.

This attention to detail in the guidance is clearly working for Sandra and her mother Mary. As Sandra says: “She’s very talkative, she’s very happy, she likes the hymns, she likes the gardening, she enjoys the company, and I think there couldn’t really have been a better outcome for her.”

Sandra Barwick’s mother Mary is one of the 700,000 people living with dementia in the UK. Mary lives in a Methodist care home in Hertfordshire, and initially struggled to adjust to the change in lifestyle when she moved in.

“I remember I took her to the home and she kept saying ‘but Sandra can’t I live with you… I could help look after the children’. It was impossible to explain to her that she couldn’t even look after herself, and her feeling of rejection was very painful. Now her main feeling is that she’s on holiday at a Christian guesthouse and sometimes she says ‘we’ve been in here a while, should we be getting packed now for going home?e_SSRq”

Gradually, however, Mary’s outlook improved, with the aid of the person-centred care provided by the staff which reflects many of the themes covered in the Dementia Gateway. Sandra feels happy that her mother is well cared for.

The home has 40 residents, with 15 in a special dementia wing, and Mary has flourished in this environment. Andrea Thorpe, manager of the care home, says: “It’s important that people with dementia don’t withdraw into themselves. Both Sandra and the care home encourage activities which engage Mary’s mind. She will actively dig in the garden and helps sow the seeds. We think it’s important that if a resident has enjoyed a hobby that they are still allowed to do that in whatever way they’re able to do it. It’s a good therapy.”

Sandra adds: “The improvement has been astonishing. She is no longer isolated – she’s surrounded by female friends. She doesn’t know their names but she knows their faces, and the nurses are very chatty. Her paranoia and anxiety have dropped away and the happy Geordie girl has come back.”

Sandra’s story is a relatively happy one. Her mother Mary is still living a full life, and the two of them are able to share outings and conversations that remind Sandra of the woman her mother used to be.

• People with dementia should not be excluded from any services because of their diagnosis, age or co-existing learning disabilities.
• Health and social care professionals should always seek valid consent from people with dementia.
• Health and social care managers should co-ordinate and integrate working across all agencies involved in the treatment and care of people with dementia and their carers.
• Care managers and care co-ordinators should ensure the co-ordinated delivery of health and social care services for people with dementia.
• Memory assessment services should be the single point of referral for all people with a possible diagnosis of dementia.
• People with dementia who develop non-cognitive symptoms that cause them significant distress or who develop challenging behaviour should be offered an assessment at an early opportunity.
• Health and social care managers should ensure that all staff working with older people in the health, social care and voluntary sectors have access to dementia-care training that is consistent with their roles and responsibilities.
• Acute and general hospital trusts should plan and provide services that address the specific personal and social care needs and the mental and physical health of people with dementia who use acute hospital facilities for any reason.

Further information

Dementia Gateway

 Five films on dementia from Scie

E-learning resources on dementia from Scie

Supporting people with dementia and their carers in health and social care (Scie and Nice guidelines)

● The Social Care Institute for Excellence improves care services by sharing knowledge about what works. Scie is an independent charity that works across the UK to capture, analyse and disseminate innovative approaches in social work

This article is published in the 7 October 2010 edition of Community Care magazine under the headline Better Care for People Living With Dementia