What does dementia care involve?

There are currently around 850,000 people living with dementia in the UK and that number is set to increase to 1.6 million within the next few decades. Understanding how to support and nurture those living with dementia within a care home setting is a fundamental element of a carer’s role, particularly as dementia affects one in three people living in a care home environment.

As the leading provider of dementia care in South East England, the team at the Future Care Group know a thing or two about the unique care that is needed by residents living with dementia in one of their care homes, as well as the specialist support needed by their families and wider support circle.

We caught up with Sue Roberts, Head of Quality and Compliance and Senior Risk Manager at the Future Care Group to get the lowdown on her brand-new (2023) five-pillar dementia strategy. Here’s what she told us…

Hi Sue, thank you for taking the time to talk us through your new dementia strategy for the future care group. Could you start by telling us a little bit more about your role at the future care group and what you are working on at the moment?

As the Head of Quality and Compliance and Senior Risk Manager, I’m primarily responsible for ensuring each home within the Future Care Group (FCG) consortium is compliant with the regulations set by the Care Quality Commission (CQC) and other required legislative compliance. Part of the quality element of my role requires me to explore the developing standards of the care home by looking for new innovative ideas that will enhance the operational efficiency of our homes and the quality of care provided.

I’m also responsible for writing and delivering the FCG dementia strategy which is my main focus at the moment. Once that is underway, I will be writing the FCG end-of-life strategy. My vision is for both strategies to be linked together under the umbrella acronym L.I.F.E:

L – listen

– Interact

F – Freedom

E– Engagement

L.I.F.E brings everything we do at the Future Care Group together and really resonates with our carers who are responsible for delivering the care.

Can you tell us more about the FCG dementia strategy?

Each of our 18 homes house residents that are living with some form of dementia. Some early stage, some mid-stage, and some who are living with very advanced dementia and transferring into the end stages of their condition. So, our dementia strategy is a vital one for us to plan and execute successfully.

Our dementia strategy is formed around five key pillars:

  1. Our staff One pillar will be very much staff focused. Bringing in the right staff from the get-go and embedding dementia care within their career journey with us will be crucial to achieving this. We will be delving into our recruitment process and thoroughly exploring and utilising the experience of all staff that join the group. On top of that, our interview techniques will home in on dementia specific questions. Once on board with us, a major part of staff inductions will focus on dementia care. The network of trained ‘dementia champions’ we have established across all our homes will continue to be the go-to people within each home who induct new staff members, conduct subsequent training, and offer support when needed.
  2. Residents Establishing effective and person-centred care plans is the foundation for us being able to deliver the exceptional, personalised care we are known for.
    If we know how a resident has lived their life prior to joining the Future Care Group family, we can understand why they might exhibit certain behaviours. It helps us determine what is considered ‘normal’ behaviour for a resident and what isn’t. For example, if someone’s been a postman for most of their life, they may have been getting up at 4am in the morning and delivering post. So, if they are up walking about at 4am while residing with us, then it wouldn’t be considered something unusual for them.  Likewise, if a resident has previously enjoyed a career as a nurse, they might still want to go and ‘do their rounds’ at night and tuck people in.
    With many types of dementia, the long-term memory remains, but the short-term memory doesn’t function as well (if at all). A dementia sufferer will often find it difficult to recall what they did yesterday but can remember that they were a fireman 50 years ago! Therefore, the more detail we understand about what a resident is like and what their whole life has been like before coming to us, the more we can help them and support them in the here and now. This is important at a time when everything is confusing, scary, and often isolating.
    Then there is a resident’s freedom and dignity to consider. Respecting a person’s beliefs, sexual orientation, and other fundamentals of a person’s make-up and life history should be continued throughout their time with us. Again, it helps us understand a person’s expressed behaviours. For example, one of our dementia residents is an 85-year-old gay man who still (in his mind) considers himself a 25-year-old. 60 years ago, it was illegal to be openly gay, so he still expresses his fear of being locked up if/when he talks about his sexuality. We must understand how we can support each resident and their loved ones to the best of our knowledge.
  3. Relatives and stakeholders Somebody that lives with dementia risks getting stripped of who they are and who they were. They may get to the point where they don’t even recognise their children and their spouses, which can be incredibly traumatic. So, supporting a resident’s loved ones and involving them in developing those person-centred plans of care that we spoke about previously is another key factor for us to fine tune. Relatives can help us with our unanswered patient questions such as what food they like, how they like to dress, and what activities and hobbies they enjoy. The technology that we have invested in goes a long way towards enhancing communication between a resident and their loved ones.
  4. Our environments This pillar involves making sure our environments are encouraging. We want to allow residents as much freedom as possible – but safely. It’s about making sure the décor is not screaming loud colours but using still, muted colours instead. We have even introduced a specialist lighting system to help regulate circadian rhythms. Disrupted sleep for people with dementia is very common and this form of light therapy is proving very beneficial to regulate this.
    We encourage the dressing of areas to aid recognition. For example, we dress a resident’s bedroom with all their home comforts, so they recognise their rooms, and we dress other areas of the home to provide opportunities for residents to safely spend time with others – a library area or shop area, for example.  We are aiming to for each home to develop their own ‘vintage café’. The thinking behind this is that we can dress the area from days gone by, linking it to a period that residents will likely remember. This might involve dressing the space with tea caddies and memorabilia from the 40s and 50s. It is an opportunity to bring the outside in by inviting members of the community to come into the vintage cafes. This is not only a great way of introducing them into our homes, but it is also a way of introducing them to dementia and dementia care.
    Outside of these environments, we want to encourage as much freedom as possible. If someone wants to go outside, we want to inspire them to, but we also want to make sure our outside spaces are designed with safety at the forefront to enable this.
  5. Lifestyle and wellbeing We want to offer residents a wide range of meaningful activities that meet the needs of each resident. This will enable our residents living with dementia to be stimulated and involved in meaningful activities and events the enrich their daily routine.

We are also exploring our catering provision and our mealtime experience, looking at making sure that we’re providing nutritious snacks and meals.  People with dementia sometimes lose their appetite – they don’t remember what hunger is or they don’t realise they are hungry. Some patients anxiously walk around constantly, so they might do better with finger foods designed to keep their energy levels up and help maintain their weight levels.

So, that’s all the pillars covering a number of different areas that we are going to highlight and support the Future Care Group team with.

Our dementia strategy all comes down to knowing and understanding how a resident has lived their whole life in order to know how we can best support them in the here and now. If someone is agitated or displaying behaviours that can challenge not just another resident, but the staff as well, it can be very difficult. But normally someone who is displaying these behaviours is trying to tell us something. So the more we know, the more we can work out what that is. We need to put ourselves into their reality. Sometimes that means going along with what they are saying and doing to keep them calm, untroubled, and settled.

You mentioned that enhancement in technology aided your strategy. How is digital health evolving and what are you pioneering at the FCG? 

Yes, digital health is just evolving so much. It is amazing. Currently, we have three complex but very impressive systems/apps that we have implemented in the group:

  1. NourishNourish is our top-of-the-range care planning system. Having electronic care records means that all staff always carry a handheld device with them to log their care provision. They can log what they’re doing as well as bring up care plans and look at notes at the touch of button. There is no paperwork, it’s all recorded in the moment, meaning that care plans are always up-to-date and accessible to anyone that needs them 24/7.
  1. PainChek® app. This genius piece of artificial intelligence monitors slight pain levels. A resident living with dementia may not be able to tell us if they are in pain. Our carers can use their handset to scan a resident’s face and the app will tune into the nine micro changes of a person’s face to highlight if they are experiencing pain. So, if a resident is experiencing any kind of discomfort, the PainChek app will highlight this and provide us with an objective pain score in seconds – all from a quick scan of the resident’s face. The pain score will help their nurse understand if analgesia is needed or if it needs to be reviewed.
  1. Radar healthcare. Radar is a quality assurance system that links to Nourish. It enables us to monitor our residents’ accidents, incidents, and events. It gives me an overview of any incidents that happen in the homes so I can then monitor any themes and trends that are occurring and establish whether it is specific to that singular home, or it is something that I need to address from a group wide perspective.

Is the technology you are using commonplace within UK care homes or is it unique to the Future Care Group?

At the moment, the way we link the systems is unique to the FCG because we bought in the planning system called Nourish which is a very top-of-the-range care planning system, and onto it we have integrated PainChek®. We are also the first company (that I’m aware of) to link Nourish with Radar.

Tell us about your Namaste care programme?

We introduced our Namaste care programme at the FCG in 2002 and I think we are probably the only care company that is doing it across all services. Namaste is an Indian greeting which is to honour the spirit within. People with dementia can become very lonely and they can often get forgotten in so much as that, if someone has quite advanced dementia, it’s quite hard to interact with them. They don’t become involved in the group activities because they are no longer able to.

Our Namaste care provision sees us bringing residents into a Namaste environment/area when they need that time to calm down, reconnect, and find some balance. Namaste areas within our homes primarily focus on creating calm.  They have gentle lighting, gentle music, or music of the waves, rain, or bird song. Within these areas we conduct Namaste care sessions, which is very much therapeutic touch – hand massage, head massage, or simply washing someone’s face with warm water, offering drinks and snacks, and just being there in the moment with that person so they don’t feel alone. They have somebody there. We’re not talking about a full-on lymphatic massage, it’s just a very gentle touch – maybe a drop of lavender oil (lavender oil is known to bring the blood pressure down and help people relax) and a very gentle massage, even just holding their hand can make a significant difference.

You’ve got to just be in the moment with that person and take away their anxiety. Touch is so important for some people. Other residents don’t want to be touched at all which we totally respect, and, in this scenario, we can try other things with them. But most people benefit from very gentle touch, massage, hand holding, talking/listening.

Sometimes it is one-on-one care, or it may be a small group of residents, but they all experience this therapeutic touch. It has reduced some expressed behaviours considerably. For example, I went into one of our homes a few weeks ago and there was a new resident who was very agitated. She was in a new environment, didn’t really know where she was, and was quite scared. So I just went into the Namaste area with her and sat with her for about 20 minutes. I gave her a hand message, just talked to her and she drifted off to sleep.

People in the last days of life can become a little unsettled so, in this situation, we have a Namaste trolley which enables us to take Namaste to them. We’ve had some experiences where we have encouraged relatives to engage in some Namaste to help them as well. When someone is nearing the end of their life it is also extremely traumatic for their loved ones, and we want to be here to support them too.

All our homes offer Namaste sessions and incorporate them within their activity programmes every week. Don’t forget, there are lots of patients that don’t have anybody to come and visit them or hold them or comfort them.  And that’s where we go back to them feeling forgotten, isolated, and lonely. Bringing them into the Namaste sessions, is working wonders.

We are working on creating Namaste kits for each of our residents which would consist of things like favourite aftershave or perfumes, creams, lotions, a fluffy towel which we can warm etc. People living with dementia do like to fiddle with things. Especially if they have always enjoyed lots of hobbies or a busy, active lifestyle. To have a small box full of things which they recognise and can fiddle around with can be instantly comforting. So, we want each person to have their own Namaste kit which they can bring into their Namaste sessions.

What role can music play with people living with dementia?

We all know how nostalgic music can be.  Even if you can’t remember where you are or what you were doing when you first heard a song, you will remember the feeling that piece of music evokes in you. Some dementia patients can recall every single word to a song, but they cannot communicate with you to you or recall what they ate for breakfast. However, put their favourite song on and they will often sing along happily to it.

A great example of this, happened recently at our Croydon home. At this home, we care for a lot of residents with quite advanced dementia and expressed behaviours.  Sometimes, a large group of residents with expressed behaviours in close vicinity can lead to everyone being quite reactive to each other. One resident was being very expressive which was causing other residents to react quite negatively, creating a challenge to the staff as well. But after we found out he loved reggae music we were able to instantly calm him. Now we know that, when this gentleman becomes agitated or stressed for no known reason and we need to calm things down, we can pop some headphones on him and play all the Bob Marley music and other artists we downloaded for him! I’ve challenged our care team to create a playlist for every resident. A playlist of their life. Music is so important for bringing dementia residents calmly back into the moment.

How common is the FCG level of care in the dementia care home arena?

Many of our training techniques are very practical. We’ve even been known to dress staff in mittens and ask them to try and eat a yogurt or blindfolded them whilst experiencing being lifted with a hoist (to help emulate the experience as a blind person). Unless you have experienced some of the situations residents may find themselves in, it is impossible to understand what it might be like. When you have had that experience, it can really help carers understand what that person could be feeling and what they might need in terms of support. A lot of care providers sell that they have a dementia strategy, but when you look closer at it, it doesn’t really mean anything which is why we really wanted to land our strategy. I think by introducing these five pillars and then weaving L.I.F.E into each of those pillars, we really help the team understand the reality of living with dementia.

That was very insightful, thank you for your time Sue.

To view the Future Care Group Dementia Strategy in full, click here

More information about our Dementia care offering can be found on our website.

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