Knowledge empowers, but how best to collect that knowledge?

I was at the Alzheimer Europe Conference in Glasgow recently, and listened to a lot of knowledgeable and passionate people determined to make dementia care better. In one presentation, a simple story was told about a lady who had recently moved to a care home with advanced dementia, and was forever wailing and shouting. No-one could identify the cause of her distress until finally, with some close observation, a carer worked out she had toothache. She applied some Sensodyne toothpaste on her gums and, hey presto, the lady stopped wailing. And then the speaker said, as an aside, the husband was able subsequently to confirm that his wife had always suffered with toothache.

This story was presented as a success, but should it be seen as such? Her husband had information that could have prevented her from going through days, even weeks of pain and upset. Information that could have avoided the disturbance of her fellow residents, and the concern of the staff. It didn’t occur to him to mention his wife’s history of toothache, and no-one asked him. I am not suggesting for a moment he was in any way to blame. I know only too well how obvious these things appear in hindsight, but there was nothing in the system to prompt that conversation. The prompt on our Care Charts regarding teeth is “What I’d like you to know about my teeth or dentures”. That may or may not have been enough to trigger a thought in his mind about her requirement for oral pain relief if he had seen it. I suspect dental issues are a significant cause of discomfort or pain in people living with dementia and it may be that a more proactive approach to information gathering would avoid delays such as this poor lady had to suffer, before the cause of her discomfort could be established.

I discovered a similar example today, in this video. A man with advanced dementia spent all day in his room doing absolutely nothing. When his family came to visit they saw that a flight simulator was included in an activities console the care home had invested in, and it triggered a memory. “We didn’t think to tell you this,” said a member of the family,  “but our father was a pilot in the Korean war.” They hadn’t said anything, no-one had asked and it hadn’t occurred to them that this information held the key to bringing their father out of his almost catatonic state. He now spends hours landing planes on the flight simulator, and has started to participate in other activities during the day as well.

Nice story, but what about the weeks, perhaps months he had been there without the information staff needed to coax him back into taking an interest in life? Whether or not there was a flight simulator to hand, the fact that he had been a pilot should have been made available to all staff; at the very least it provided an opportunity for a conversation at some level, perhaps an attempt to interest him in pictures of aeroplanes, anything.

I suspect these stories are the tip of the iceberg, certainly I have heard many, many more. We need to increase awareness of WHY information is collected from friends and families when their loved one moves to a care home, find ways of doing it better, and make sure it is accessible to EVERYONE interacting with the person.

Over 18,000 people requiring care now benefit from Care Charts

Map of care homes using care charts
Zoe Harris with a map of the UK showing where the award-winning Remember-I’m-Me Care Charts are being used.

PJ Care’s decision to introduce Remember-I’m-Me Care Charts into the daily life of their neurological care centres means that over 800 care homes and hospitals are now using these award-winning communication tools. Trials have demonstrated that Care Charts not only increase the quality of life of those being cared for, but can also provide peace of mind for their relatives, and boost staff morale.

“I first came across Zoe’s charts when she was nominated for the Innovation Award in the Great British Care Awards” explained Jan Flawn, Founding Chair of PJ Care. “I was made aware of them via one of the category judges and it struck me immediately what a simple yet effective idea this was. We pride ourselves on maximising the quality of life of each person we care for, so our staff members are highly trained and we have excellent staff / resident ratios, but it’s still difficult to be absolutely sure that every member of our team is aware of – and kept up-to-date with – a resident’s needs and preferences when communicating is a challenge. We chose the Twist-N-View version of the charts because they allow us to make key information instantly available whenever a staff member needs it, and keep it private when not being referred to.”

“The first Remember-I’m-Me Care Chart was designed to assist in the care of my husband,” explained Zoe Harris. “He spent his final 13 months living with advanced dementia in a care home, unable to communicate his needs and preferences. The care home recognised the importance of collecting information about an individual, but had no reliable method by which to ensure the information was made available to all carers and any other members of staff interacting with their residents. That first design is still popular, but I was aware that in certain environments it was difficult to hang the chart in a discreet manner, so we developed the Twist-N-View to address this issue.

“I’m very proud that prestigious care providers like PJ Care have recognised the value of these cost-effective and simple to use charts, and that they are having a beneficial impact on the quality of life of more than 18,000 people and their families, as well as helping to boost staff morale.”

PJ Care is a leading provider of specialist neurological care and neuro rehabilitation for people aged eighteen and over with progressive or acquired neurological conditions.

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Access books, reminiscence boxes, activities and more…

[updated May 2015]

I was inspired to pull together this list of resources when attending a WhoseShoes event in Kent and heard about Kent Libraries’ wonderful list of reminiscence boxes and associated training.

A number of councils and other organisations offer a variety of dementia-appropriate books, games, activities and reminiscence or rummage boxes via libraries and other locations, for the use of care homes and individuals.

The list below just scratches the surface; if you are aware of services that we have not included please send details to feedback@carechartsuk.co.uk.

Most importantly, encourage them to list their services online! The internet is a vital source of information for people living with dementia and their families as well as care homes and organisations / individuals offering activities and events for people with dementia. If Google can’t find it, it’s going to be more difficult for people to get to hear about it.

Other sources of information

The International Federation of Library Associations and Institutions (IFLA), the international body representing the interests of library and information services and their users, have published guidelines giving practical recommendations on how to provide mental stimulate with books and other library materials. The publication also includes suggestions for library staff on how to tailor such services to the target population.

Other sources where these services may be listed are: Alzheimers Society…  Dementia Action Alliance…  Dementia Challengers…  Dementia Web

National Organisations

The Reader Organisation is a charitable organisation which runs Reader Groups in Care Homes and other locations.

Listening books is a charity providing an online and postal audiobook library service and also offers organisations their own mini library of 200 audiobooks to lend out to patients or residents or to play in communal activity areas.

Books on prescription is led by the Reading Agency  who worked with dementia healthcare experts, people with dementia and carer groups to select a list of 25 titles that provide support and advice for people with dementia and their carers. The titles can be recommended by health professionals and are available for anyone to borrow free-of-charge from their public library.

Regional organisations

Bolton offers free bulk loans of books for care and nursing homes on application to any library.

Bury has an impressive list of dementia-related titles.

Exeter Library, one of Devon’s Libraries, stocks a wide range of books offering advice and information on dementia.

Glasgow Museums has a wide range of themed kits available. They cover topics such as childhood and tenement life. Kits contain original objects, photographs and other material

Kent Libraries not only ensure they have a good stock of appropriate books, but also make available Reminiscence Boxes to care homes and people living with dementia, and provide training for staff on how best to use them as well. Contact openaccess@kent.gov.uk or call 03000412413

Leeds Care & Repair offer a free service for family members and carers to borrow fun games and activities

North East Lincolnshire Library has a dementia specific section

Liverpool Museums As part of the House of Memories programme you can borrow a ‘memory suitcase’ which contains objects, memorabilia and photographs. The suitcase contains a range of objects relating to the past including Liverpool Overhead Railway posters / Music and fashion memorabilia / Picture books and games / Ford Anglia model car  Pre-decimal coins and pound notes. The memory suitcase is a free loan service which is available from Museum of Liverpool for up to two weeks at a time. Also available: dementia awareness training to give you the skills to run a reminiscence session.

March Museum (Cambs) has loan boxes, a resource which use original, and a few reproduction, artefacts as a stimulus for learning in schools, care homes and almost any social club or discussion group.

Newcastle Library has a dementia specific section

Norfolk libraries are marking Dementia Awareness Week with free workshops and new dementia book collections and have a collection of Reminiscence Kits and Packs

Nottingham are piloting reminiscence packs or ‘Memory Lane kits’ to support people with dementia and their loved ones.

Poole Borough offer a special library card which enables people with dementia to borrow books for up to six weeks, instead of the usual three, and they stock a  complete set of Picture to Share books. People with dementia can borrow audio books, music CDs  and DVDs free of charge (2 per visit) and take advantage of the free Home Library Service for people unable to visit the library themselves, and for carers.

Somerset Library has a dementia specific section.

Wiltshire run library memory groups in Mere, Pewsey, Purton and Warminster libraries every week. The sessions are free of charge and refreshments are provided. The groups offer an enjoyable, relaxing opportunity to meet others and stimulate positive memories. In addition, Wiltshire Council is launching a new collection of dementia books, available in libraries. The aim of the collection is to provide a range of information about dementia and how to support people to live well. The books will be available in Chippenham, Devizes, Trowbridge and Salisbury libraries, and will be available to users of other libraries through the normal loan process. For more information people should contact their local library.

Please supply further resources to be added to this list or updates to feedback@carechartsuk.co.uk.

 

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Getting to know each other

Carer's Chart

We’re always going on about the importance of needing to know about a resident’s needs and preferences, but what about your staff? Might they like to share what they like and dislike, and might they learn something from the exercise as well?

Encourage your staff to share what matters to them by completing one of these free charts. With everyone’s agreement, display them where other staff, residents and their families can see them, creating an opportunity to appreciate what is important to each other. Generate a sense of mutual respect throughout your community, and create opportunities for meaningful interaction between every member of that community.

If you are using our Care Charts for your residents you will see that we have used the same symbols* as those on the resident’s charts. This helps make the point that we are all similar in having needs and preferences, that whether we are a carer or someone being cared for, we all have things in our lives that can cause pleasure or distress.

Download as many copies of the Carers Chart A4 as you need, encourage your staff to share, and develop the relationship and mutual respect between staff and residents and their families. Indeed, it may be appropriate to invite family members to participate as well.

And if you’re not already using our Care Charts for your residents, give us a call now, on 01403 210485, or email enquiries@carechartsuk.co.uk for further information.

*If you are using Style 2 and would like a Carer’s Chart in the same style please send us a request via email to enquiries@carechartsuk.co.uk.

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