Season’s Greetings from ADS

As it’s nearly Christmas we’ve decided not to have a formal blog this week. Instead we just wanted to say thank you to everyone for your support and interest, and we look forward to starting again in the New Year. We’ll try to keep our blogs varied and interesting, and keep you up to date with what we’re doing on our various projects. We’ve already got a few lined up so watch this space!

Just to give you a bit of an insight, our top three most popular posts have been:

• A trip to The Netherlands – visiting a dementia village
• Namaste Care Intervention UK – Celebration event
• From Amsterdam to Worcester, a dive into research on people with dementia and their family carers in the UK

Reflecting on 2019 – celebrating success

As 2019 rapidly draws to an end (How did that happen? I’m sure it was only May a few weeks ago!) we’re taking a brief pause to look back at some of the highlights* from the past year. Projects ending, projects starting, new education ventures, articles, conferences, special occasions and awards, 2019 has had it all.

* There’s been a lot going on this year and we don’t have time to mention it all, so apologies to anyone who feels we’ve missed something out!

ADS at UK Dementia Congress

Last week the Association for Dementia Studies (ADS) travelled to Doncaster for UK Dementia Congress 2019 which was held at the racecourse.

The event was opened with Professor Dawn Brooker introducing two of our TAnDem PhD students, Ruby Swift and Karen Gray, who talked about their work. They were followed by a relatively intense debate around the role of ‘environmental lies’ in care homes (e.g. fake bus stops, murals).

How can I tell you what’s going on here? – The development of the PIECE-Dem observation tool

People with advanced dementia face particular challenges in not being able to tell anyone directly about their experiences, especially if care is poor. They are also more likely to be vulnerable to the risk of abuse, neglect and loss of dignity. Whilst it is recognised that much can be gained by interviews and focus groups, the perspective of those with significant communication problems is likely to be under-represented in research.

One of our early research projects was to develop a robust and sensitive tool to capture the experience of people with advanced dementia. The aims were to develop a tool that:

• Focused on the experience of people with advanced dementia to ensure that their perspective is included in research;
• Could capture both positive and negative experiences of care which could help differentiate between care environments where abuse, neglect and loss of dignity were more or less likely to occur;
• Could be used both by researchers and practitioners with minimal training to assess the experience of those with very limited or fluctuating cognitive abilities;
• Focused specifically on observable signs of abuse and neglect or risk factors associated with this.

Namaste Care Intervention UK – Celebration Event

On a very wet Tuesday we gathered at the University of Worcester Arena to celebrate the findings from the Namaste Care project that we’ve been working on for the past three years (well done to everyone who made it through the terrible travel conditions to join us!).

Professor Dawn Brooker opened the event by thanking everyone who made the project possible, before Joyce Simard – the creator of Namaste Care – shared her experiences of developing the approach in the United States of America. Her desire to improve quality of life for people with dementia in care homes and give them “a reason to get up” really came through.

What’s going on? A whistle stop tour of what ADS is doing at the moment

We often have a tendency to be so busy that we never take a step back and take stock of what we’re actually doing, so here’s a quick update summary of the various projects, education, consultancy and other work we’ve currently got on the go. (Apologies to colleagues if I’ve missed anything out!)

In no particular order…

SCI-Dem (research project) – it’s well under way and making good progress in terms of its realist review. The first search has been done and articles are currently being reviewed and included/excluded as appropriate. The SCI-Dem blog is also up and running, providing regular project progress updates.

From Amsterdam to Worcester, a dive into research on people with dementia and their family carers in the UK – part 2

Hi again. In my previous blog I described who I am and why I am currently working for three months with the Association for Dementia Studies at the University of Worcester. I have been here for almost two months already and I would like to share with you some things that I noticed.

But first, I would like to start by mentioning how everybody has made me feel very welcome. Not only my colleagues at the University, but also all the people I met during my visits to care homes, at workshops and courses. That has been a good basis for making me feel comfortable in asking questions and learning about research on and support for people with dementia and their family carers in the UK.

So how much will it cost? – Why we need to know the cost of new interventions.

When we research or evaluate new interventions we often tend to focus on what impact they have for people with dementia, family carers and or staff members. While there’s nothing wrong with that, and obviously it’s a very important thing to find out, we can overlook some of the more practical aspects such as how you implement it and how much it might cost. Our Namaste Care Intervention UK (NCI-UK) project is very much focused on both of these areas, and this blog looks at some of the issues around the costing side of the project.

(For those of you want a quick recap, Namaste Care is a multi-component approach that aims to improve quality of life for people with advanced dementia in care homes. It combines physical, sensory and emotional interventions such as hand massage, music, nature, hair brushing, aromas, lighting, soft blankets, food and drink. It was developed by US practitioner Joyce Simard who recommends delivering Namaste Care sessions twice a day, seven days a week.)

From Amsterdam to Worcester, a dive into research on people with dementia and their family carers in the UK

Hi, my name is Marleen Prins and I will start this blog with introducing myself and carry on with describing how I got to work as a fellow at the Association for Dementia Studies (ADS), what projects I work on in the Netherlands and what my goals are during my stay here.

Marleen Prins

I am a 29 year-old psychologist and researcher and live in Amsterdam, the Netherlands. I work at the Department on Aging of the Netherlands Institute of Mental Health and Addiction (Trimbos-institute). At the Trimbos-institute, I work on projects regarding the subject that I find the most interesting topic in the world: (support for) people with dementia and their family carers.

Capturing the experiences of people with dementia – the Namaste poems

As part of the Namaste Care Intervention UK project we really wanted to capture the views and experiences of people with dementia, but from previous projects we know that this can sometimes be quite a tricky area – especially when people have more advanced dementia.

We’ve been lucky enough to work with renowned poet and author John Killick, who has a strong background and experience in working closely with people with dementia and their families, and creatively engaging them in feedback and evaluation. John is skilled in using innovative communication with people with advanced dementia and at end of life, even when they may have difficulties communicating their thoughts through words. He has previously used a wide array of stimuli including pictures, words, puppets and photographs to elicit feedback.