With my colleagues, Stephanie Petty, Amanda Griffiths, Dons Coleston, we have been looking at how people with dementia express themselves when distressed and how health professionals respond when this happens. One study, which is part of Stephanie’s PhD, has involved interviewing members of a hospital ward team and asking them questions about what they do in these circumstances. Two specific questions ask the staff what might be tried to help the person with dementia and, of these responses, what they find to be effective.
We have submitted a paper on our findings and it looks as if it will be published, which is great news for us. This blog is not to detail everything we found but suffice it to say that not everything that was suggested seems to be effective – for example, reassurance and calling the patient’s family weren’t endorsed as being effective in practice. However, one strategy that was identified as being useful was offering the person a cup of tea. The anonymous peer reviewer of our paper commented that the offer of a cup of tea should be regarded as a cultural construct, and that we should add some text to make that point in our paper. This piece is about tea drinking in a UK cultural context; drinking tea in China or the Japanese tea ceremony are beyond the present scope.
A cup of tea is obviously more than simply a hot drink. The cultural construct refers to all the other things that go with it. For example, the cup of tea is deeply at the heart of our lives. In the hospital setting, it would almost certainly be made with a teabag, the hot water coming from a small wall-mounted water heater rather than a kettle. It would almost certainly be made with milk. Sugar will be offered but not presumed. One or two (plain) biscuits may be provided. The tea is likely to be in a cup with a saucer. Offering and making the tea and sitting with the person while they drink it is a small act of kindness. It allows something from the ordinary, familiar world to enter the strange, possibly threatening context of the hospital ward. Time stops for a while for this reverent act.
The tea provides a focus, a temporary break, which makes other things bearable. Almost as though you couldn't face more difficult realities, such as talking directly about illness or upset, or facing the whole of the rest of the day, without this containing and structuring ritual. It somehow makes the day bearable. Everybody knows what to expect, we are just having a cup of tea, it takes this amount of time, which limits the feelings of being anxious, stranded, can't be yourself-ness that comes with being in hospital (for the staff too, who get overwhelmed by the chaos).
Offering ‘a cup of tea’ is different from some of the alternatives that could be posed. For example, whether you would like ‘a cup of coffee’ is different. Coffee is alerting, ‘let’s go for a coffee’ suggests either being at work or being socially active, e.g. morning coffee during a hectic session of shopping. The ‘cup of coffee’ may also have an associated agenda, which the ‘cup of tea’ doesn’t. It may be that the response to being offered a cuppa tea is ‘I’ll have a coffee’ so the end result is coffee; however, what matters is that the offer was made in terms of tea. ‘Would you like a drink?’ is a different offer altogether, and open to the suggestion that alcohol may be involved. Also, it is probably too open-ended a question for a distressed, frightened hospital patient who has dementia.
Whenever I visit my 90-year old mother, I always offer her a cup of tea. She accepts it, we drink tea around her, she usually leaves it untouched. Last week, she drank almost a full mug. I think she was dehydrated as it was very warm outside and in her room. The mugs are familiar from when she had her own house. The cup of tea is central to our short visits. It enables us to take a break together and share this cultural comfort.
Tom Dening, and colleagues
16th August 2018
There is much debate on when is the best time to offer advance care planning to people with dementia. I would say as soon as possible after the diagnosis of dementia is made. Many professionals feel that getting people with dementia to start thinking about their end of life care wishes is both too soon and insensitive within the diagnostic process. Planning for end of life needs to take place early in the course of the disease process, while the person has sufficient mental capacity to consider their preferences and make decisions, not the focus of this blog, but a timely diagnosis of dementia whereby they still have capacity to make plans for their future is essential.
In my research and studies I have found families affected by dementia only too willing to engage in such discussions, so who is the conversation difficult for?
Good, effective communication is essential in enabling advance care planning for anyone with a life-limiting condition but perhaps even more so for people with dementia. Communication is a two way process but in people with dementia their ability to communicate with others and to receive their communication becomes increasingly difficult as the condition progresses.
So there are several tips and pointers that may help you to see things from the perspective of the person with dementia and their families:
Give me time…..
1. It may take me longer to process what you are saying to me and to think of their response - give me sufficient time to respond to you. Only ask one question at a time and try to avoid open ended questions as these can confuse me further and limit my ability to respond to you. Some people mirror what I say (repeat back to me) to confirm what it is I am saying. This is helpful to me as confirms with me that I have been understood and also to feel in control of the conversation.
What is important to me is….
2. Ensure a person-centred approach try and help me to describe my values and preferences; this is a good way for you to start a conversation on advance care planning; what is important to me (and my family); my personal history, likes, strengths, beliefs, etc. This can also help when starting to think about a Lasting power of Attorney.
How you should approach me….
3. Face me directly and make good eye contact with me, this gives me every opportunity to understand you are focused on me and helps me to communicate. Please use short, clear sentences with me that are free of jargon and ‘clinical speak’ and use language and words that are familiar to me.
Yes, I have a family but….
4. I may, or may not, wish my family carer/member to be present; ensure you ask me and never assume.
Familiar space….
5. Ensure the space chosen to have the conversation with me is quiet, calm and free from distractions. Actually, my own home or familiar surroundings is best.
Actions speak louder than words….
6. Be aware of and maximise upon your non-verbal communication: tone of voice, facial expressions, hand gestures, etc. These will all help me to better understand what is being said to me. Also be an ‘active listener’ and be fully attentive to my body language and expressions as well as what I am saying to you – sometimes they may not convey the same meaning. Lastly you can use other ways to communicate with me if I am finding things difficult – try word cards or pictures (e.g. www.talkingmats.com/).
Other useful resources
A useful resource to guide into what to ask and how can be found in the NCPC brief guide on Difficult Conversations for Dementia: www.ncpc.org.uk/
AFIRM is a framework to guide professionals in holding difficult conversations and to use these as opportunities to discuss any apprehensions or queries the person with dementia (and/or their family member) may have.
Acknowledge the persons concern or questions;
Find out what the person knows about the condition;
Immediate concern(s) addressed by providing adequate information within the scope of your work; Respond to subsequent questions by providing accurate information within the scope of your work and a
Meeting suggested to discuss their concerns with significant people, such as, a clinician, care coordinator, GP, family member(s), legal representative, etc. HSE. The National Dementia Training Programme. https://www.hse.ie/eng/about/Who/ONMSD/eductraining/dementiaeducation
Admiral Nurse Dementia Helpline. If you have any questions about dementia or if you need advice and support from an Admiral Nurse please contact our helpline: Telephone 0800 888 6678 or email: [email protected]
The title of today's blog is not just a rallying cry to encourage fellow Dementers and their Carers to have as positive an approach to each day as possible. It is also, a statement that many may agree with and see as being obvious. However, where I am coming from in relation to this matter is that, when one can not operate in the way one was able a few years ago, it is easy and in many cases understandable, for the individual concerned to give up, not only on things that they can no longer undertake, but also on aspects of life that they are both physically and mentally capable of doing. It is therefore, I believe, important, in the first instance, that the Dementer and their Carer make every effort to ensure that they both undertake as many tasks, both physical and mental, as possible.
There may be positive aspects and pleasant surprises, for all concerned, if the positive "Do what you can, while you can" approach is adopted. This positive attitude and outlook should also underpin the approach and attitude of any health professional dealing with and being responsible for people with Dementia. They, like us, should be examining the opportunities that Dementia may provide, however brief, for people with the disease to continue to develop their potential, within the confines / limitations the condition presents. This is not to deny the, current, unstoppable advancement of the disease, but rather, to maximise the potential "good life" for both the Dementee and their Carer. This "Good Life with Dementia" should be given the opportunity to flourish for as long as it can, to the benefit of all concerned.
We believe passionately in the power of daily activities and diversions for people living with dementia. The Daily Sparkle reminiscence newspaper was specifically designed as a reaction to what we felt was a lack of daily stimulation for those people living with dementia. We wanted to provide something that was a daily dose of fun, interesting and enjoyable content, and something that would ensure people weren’t sitting alone in care homes, retreating inside themselves. Crucially, we wanted to provide something that got people talking, that ensured a regular and continual human connection, something so vital for us all.
Reminiscence performs many functions – at its most basic level, it is using familiar, safe topics to generate happy memories. It can also work well as a tool for life review and life story work, finding out more about who the person used to be, thus helping to reinforce their sense of self and positive identity. But, perhaps the most important aspect of using reminiscence, is to start conversations.
Informal reminiscence includes talking about experiences we have in common or have shared. Reminiscence materials like photos on the wall, objects that are easy to see and touch, music and dance, and even The Daily Sparkle newspapers, offer spontaneous opportunities to start conversations – between residents, between carers and residents, and even between family, friends and residents. These conversations are vital for building confidence and helping someone to retain a sense of self-worth and wellbeing.
We don't always recognise that people can get out of the ‘habit’ of talking to one another, having been psychologically or physically isolated. The ‘art of conversation’ is a skill which needs to be practised, and the longer we go ‘without’ regular conversation, the more likely we are to lose confidence in our ability to converse socially and build relationships. Starting with safe, easy topics – such as old favourite radio shows, vintage dress patterns or cars from the 40s –> is a great way to get people to open up and start talking again. Often reminiscence sessions will reveal that a member of the group has a personal connection to the event or subject being discussed – perhaps they drove steam trains or helped build Waterloo Bridge – and this can lead to a host of questions, interesting chats and more reminiscence.
Music, songs and quizzes are also a great way to use reminiscence – people’s recall for music is extraordinary, and even playing the starting bars of an old favourite tune can have half a room humming along in seconds. Sessions like this can be themed around a singer or a particular year – getting people to talk about what music they bought, what they liked to dance to, what music they played at their wedding, what concerts or dances they went to and which other singers they liked, can be the starting point for a busy, joyful reminiscence session.
These older, happier memories are usually much easier for people with dementia to recall, and remind them of a time in their life when they felt stronger, more powerful and more like themselves. Sharing this aspect of their identity is an empowering process and can help them with developing friendships and feeling less isolated. If someone can reach out and share a common memory with another person, even a family member, it can open doors to whole conversations and renewed connections.
Becoming a dementia friendly organisation is no longer about satisfying some altruistic need or Community Social Responsibility policy. It is a matter of complying with equality legislation.
The number of people with dementia who are of working age is estimated to be nearly 50,000. Due to the difficulties in diagnosis it is possible that there are more. I think it is not a long way off before we have a case resulting from discriminatory attitudes towards employees with dementia.
The symptoms of dementia in younger people are the same but the impact can be more far reaching. Many will have more financial commitments, children and parental dependents. They will have future hopes and aspirations to fulfil before and after retirement.
Becoming a dementia friendly organisation promotes the empowerment and inclusion of employees living with dementia. It develops managers listening and empathy skills and support employees to access the right solutions and adjustments they may need. The process includes raising dementia awareness which is an impactful way to meet the equality and inclusion agenda of any reputable organisation. Training can ensure that all employees understand dementia diseases, the appropriate language and treatment used to talk about people with working age dementia and ultimately support then to feel positive about themselves.
There is a serious business case for recognising that people with working age dementia can continue to be productive and make a valuable contribution to their organisation for a long time. The right information, support and strategy will increase retention, reduced absenteeism, build greater employee loyalty. A compelling business case for becoming a dementia friendly organisation.
For more information about our Dementia Friendly Organisations programme, please visit: http://www.joco.gb.net/dementia-friendly-organisations/
The help that is available is tremendous in every way.
I feel weary today, as I do most days. Being tired seems to be the norm, having both knees replaced and both hips replaced, as well as having both my shoulders fixed, in the last six years. Plus, I’ve had three other operations on my spine. They all, as you can imagine, take their toll. I have asthma and COPD (chronic obstructive pulmonary disease), so I've had to come to terms with the physical side of my body being knackered, and it came as a bombshell when my brain wasn’t working as well as it should. That was a bummer, a bit devastating I can tell you.
It would have been so easy to have gone into a deep depression, as I am sure that some people feel and some people do, but I didn’t, and that was all down to my wife Margaret. Had it not been for her, who is always with me . . . she looked at the positives at what we had. Saying “Rght, nothing we can do about the diagnosis – so let’s just get on with it, let’s see what help we can get”, which we did, together. The help that is available is tremendous in every way. There are pop-up dementia cafes all over the place, with new ones being set up frequently, and it is well worth the visit to meet people, who have the same diagnosis and have similar problems, who may give you some tips about coping with your diagnosis that perhaps you hadn’t thought of.
Once the profession help came I was hooked. I saw the unbelievable benefit of information in tackling dementia, and that was the underlying message from all the dementia diarists. The message for newly diagnosed people is, in the words Corporal Jones, “Don’t panic! There is help. Tere is information, and there are dozens of caring people.”
An audio version of this blog can be accessed at: https://soundcloud.com/dementia-diaries/steve-4-nottingham-uni
It has now become necessary to keep the diary so I don’t forget even the most mundane of things.
I thought I would do my diary entry on the same day every week. This hopefully will show over time if there is any significant changes in the way both I report things, but also if I find it more difficult to do so. The point of a diary is to report anything and nothing, however trivial or insignificant. So if nothing has happened, instead of not submitting something of importance or something one does, I’ll submit a diary entry saying nothing has happened. This will give a continuous flow of information. So here we go:
My diary day will be every Sunday. I stick, like a lot of people, to a fairly simple regular routine with only minor changes to suit particular circumstances. I hate change. So my diary starts last Monday and finishes today, Sunday. I have a small diary notebook in my jacket pocket and Margaret has a similar small diary in her handbag. We also have a large house diary always open at the week in hand. I was quite used to keeping a diary because I used to work three shifts, so that it was necessary to know when I was supposed to be at work. But that was years ago and it has now become necessary to keep the diary so I don’t forget even the most mundane of things.
So last Monday, went to the monthly dementia meeting at the Educate group at the Meadows NHS hospital. It was packed; there were a few people I have not seen before. So that was good. Everyone introduced themselves and it was interesting to see how this disease affects different people. I was asked to help to do a quick dementia audit of the building with two other members of the group. This was to identify if the signage from the entrance to the where the meeting was o take place was easily seen and correctly placed. I found this very very interesting. There were a few visitors that evening from other areas who had come to get ideas for setting up similar schemes. I was given my dementia diary phone and shown how to use it by Joe, one of the other diarists. All in all, a very good meeting. From there we went to do our weekly shop at Aldi and Asda then went home.
Tuesday, Wednesday and Thursday went by with nothing to say. Friday was a very busy day. We have a small terraced house with a cellar, which recently had become a little bit of a dumping area. So we decided to clear it out. It was mainly wood from a dismantled wardrobe and an old six foot snooker table. I found this a real struggle but knew having started we must finish it. Dragging all the wood upstairs and into the car really took its toll but we did it, Margaret doing the lion’s share. We drove immediately to the tip, which luckily for us, is only a mile away and dumping it into the car from the skips was relatively easy. We got home and both collapsed exhausted and Margaret made us both a cuppa.
An audio version of this blog can be located at: https://soundcloud.com/dementia-diaries/steve-3-nottingham-uni
Time is not my friend. Telling the time is such a challenge now.
I’m standing with my jacket on, just glancing at, well, not glancing at the clock, I’m staring at the clock, frightened, because time is not my friend. Telling the time is such a challenge now. I understand and can tell you what the numbers say, but I don’t understand or I can’t convert it into actual timeframe. What I do know is that I’m alright with 10 o’clock, anything that’s o’clock is easy. So, I’m leaving the house at 10 o’clock, so I’m glancing at the clock, seeing so that I leave in plenty of time.
I have difficulty measuring time, difficulty understanding time, and my daughter and I have tried to identify how she could help me. One of the things I do have and have used over the last 3 years is my talking watch, because it not only tells me the time, but if I press it again, it tells me the day and the date, so that sooths me and helps me in another way.
But yes, my daughter and I, we talk about dementia time. It means nothing, it can be minutes, weeks, hours, days, nothing. It means nothing to me. So Donna’ll say to me, my daughter, which defuses a lot of kind of afraid conversations: ‘Oh, are we talking dementia time, mum?’ And I just smile and laugh, and I know she’s telling me in the kindest, nicest way, that once again I’ve got time distorted, and it is causing an issue. It could cause an issue if we hadn’t these smart things in place to help us.
So yes, time distortion. I’m absolutely sure, I’m looking at the clock, and I’m sure the time is going backwards. You know, one minute I look at it and it says 10, and then I look at it again, and I think ‘Oh my god, it’s going backwards’, and then I need to go and check. And then I start to say ‘Was it 10 o’clock or 12 o’clock?’ And then I have to go hunting things again. It causes distress.
So, dementia time is what I’m on.
An audio version of this blog is available at: https://soundcloud.com/dementia-diaries/agnes-3-nottingham-uni
When you have difficulties and issues you begin to realise how many times you cross a road.
You know I expected the memory issue with dementia and put up tips and strategies, and people talk about them a lot – in fact all the time. But my senses, my sensory challenges – this is a different matter and they are so scary, especially a normal thing like crossing the road. We cross the road lots of times, we don’t think really think about it – how many times we cross a road in a day. But when you have difficulties and issues you begin to realise how many times you cross a road. And all the times that you have to walk further to try and get a proper crossing to cross the road safely.
You have to expend an awful lot of energy and it can be quite hard and almost put you off from going out. When you’re crossing the road you tend to use a lot of your senses, we don’t really think about it: the cars, the environment with the sounds and the noise, you have to use your eyes to look, to see and then you’ve got to judge how big are the cars – are they coming towards you or are they going away? And then when you look left and right and left again that kind of knocks your balance off, moving your head from side to side and then you jog your memory and you forget; and you’re slower because your judgement is slower. It’s almost sensory overload.
I’ve been bumped crossing the road a couple of times, I’ve been scared and had near misses. And eventually, I have a low vision officer, she has said to me that I really need assistance when crossing the road. Can you imagine it? Here I am and I have to look about me and ask for assistance to cross the road. People look at me and think – you know I don’t look different, I don’t look as though I’ve got anything wrong with me why does this woman want help crossing the road? I think I was surprised when it first happened to me. I didn’t know why – I’m not a consultant. I did ask the consultant but it was as if he’d never heard me say anything, and I did speak to my CPN (Community Psychiatric Nurse) and she said ‘oh that will be your spatial awareness’, depth perception or something like that, and never went on to explain.
An audio version of this blog is available at: https://soundcloud.com/dementia-diaries/agnes-2-nottingham-uni
Here, as promised, is another set of ‘Tentative Tips’. As I said previously, please do take them for what they are – ideas shared in the hope they might prove useful to others as they have proved useful to me and to carers I have talked to.
Find people who understand
Carers’ Groups can be a God-send. Through my work I know the mental health and social care systems inside out, but nothing prepared me for the problems and emotions I would face when I began to care for my parents. Don’t be proud. Seek out other people in similar situations and have your friends and family support network on standby. The Alzheimer’s Society run some excellent Carers’ Support Groups (including the one I attend), and there may be local Memory Café sessions where you can take the person you care for along and have a chat to other carers, too.
Not all Carers are in the Same Boat!
My dad lives a long way away from me. Although people who care for someone who they live with may have similar experiences of dealing with dementia, the problems of live-in or local caring are quite different from the problems of long-distant caring. I have found another long-distance carer (via the Carers’ Support Group) and we now meet once a month for lunch and to off-load and support each other. Even the two of us have quite different problems to address, but it really helps to know that someone else is in the same boat and bailing out hard too!
Don’t believe everything people tell you
Be stubborn! I was told we couldn’t get continence pants for my dad on the NHS, only the pads. Unfortunately my dad couldn’t work out how to use the pads and they would end up half way down a trouser leg with the peel-off strip still in tack. With the help of the District Nurses I argued his case because both his memory and eyesight problems prevented him from being able to use the pads. Common sense won out in the end and we now have regular deliveries of the pants on the NHS. Fight your corner, gently but with determination, if you need to – or ask others to help or share their own stories or ideas.
Find the fun
Fortunately for me, my dad has retained his quirky sense of humour – and what could lead to more humorous situations than dementia? We often have a laugh about what he can’t remember, or the tricks his mind plays on him. He has also developed a very strange love of ducks (yes, ducks), and his house is burgeoning with quack quackerly variations from cuddly to concrete! If the person you are caring for does not see the funny side (my mum was developing vascular dementia before she died and became aggressive and paranoid), then find a friend to talk to and don’t be afraid to laugh about it together.
Frustration is normal
Yes, it is!
Embrace personality changes
Dementia can make you feel very hopeless as you watch someone you love change and eventually not even recognize you. People often say that they’ve ‘lost’ someone, or that ‘they’ve already gone’ long before they physically depart this world. But personality change can be embraced if we find ways to relax into it, and can even have surprising benefits. For instance my dad was always a very self-contained man who did not express his feelings. The Alzheimer’s has opened up his softer side – he feels sentimental about things that left him untouched before (see ‘ducks’ above) and even tells me ‘I love you’ – something he never articulated to me in earlier years.
MAD MOMENT…
Phone call from the ‘builder down the road’ telling me my dog had got loose and had been rescued from running around the cars in the road. I don’t have a dog. It took me a few moments to remember I had got my mobile number engraved on the tag worn by my dad’s lovely westie. And, yes, she is OK and safely returned to her doting owner.
