Dementia Bereavement

When I was given my diagnosis, by three professionals who each answered their mobile phones during our meeting, I came out and had no one to talk to, nowhere to sit and have a cup of tea, quietly, before driving home.

A diagnosis is a bereavement. 

For the person with dementia it seems like a death sentence. It is the loss of your future. It is terminal. It is a void.

For the spouse, partner or family, it is a bereavement too. The loss of their spouse or parent. The loss of a future together. The loss of a retirement together, after a lifetime of working.

And it is hopeless. There is no cure. There is no stopping the disease causing the dementia.

It is frightening. It can look like the end of life as we knew it. 

It is also what many people regard as the most frightening disease of all. More so than cancer now. And probably the most misunderstood disease.

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So what would I have valued? Someone with the disease to talk to. Either when walking out of the consultation, or whenever it felt right in the next weeks.

To hear that actually life goes on just the same. That you mustn’t stop doing what you enjoy. That you should continue to take all the same risks you did before diagnosis.

And to meet other people with the diagnosis at the same stage. 

I now know how important and valuable it is to sit down with people with dementia at the same-ish stage.

The days and weeks pass and many people don’t know how to feel.

If you are in a positive mood you may think it is good to know what has been causing these small but growing difficulties.

If you’re feeling down you may think you don’t want anyone to know. You don’t want to meet people, because they will think you are stupid, or mentally ill, because you can’t finish a sentence or keep up with them. And you are ashamed that you are no longer normal and able.

You may find that friends and family no longer visit. They don’t know what to say. They don’t understand the disease. They might even think they could catch it off you.

They want to remember you how you used to be, so they stay away. They actually say that.

They imagine you can’t talk or do things any longer because you have this awful, frightening disease. They can’t stand the thought of long silences, and embarrassing forgetfulness.

So how does this make you feel? When no one actually wants to listen to how you feel.

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When you live with dementia you think about it all the time. You question everything you do or say.

Why? Because every trip or mistake or lost word is a reminder that things no longer happen automatically. And if you don’t pause and prepare before you do something you may well do it wrong. Or forget to do it.

And every day you question whether you have got worse. 

It’s not a morbid introspection. People say that their loved ones who live with the brain disease become self obsessed. They become less able to think of others’ feelings and needs.

That’s because you are continually examining your actions and your memories and your words, to find the right ones, or to avoid mistakes.

So I think we end up living two lives. 

One is our inner self, the one with dementia, who feels lost at times, fogged, unable now and then to do things we used to without thinking. And this inner self has feelings and reflections which you cannot share because people don’t want to hear. So you feel lonely, and you withdraw further.

The second life is the outward facing self, the one who bravely gets on with a smile, because that’s what others want to see. This self is a denial. It is living behind a mask.

And this is why we value peer support groups so much. Because the only people who understand us are people living with dementia. We can open up our inner selves. Reveal our anxieties and doubts. We can know that others feel them too. And we can laugh at our mistakes, at getting stuck in a sentence, or just cursing the world.

Peer groups enable us to get rid of some of our accumulated emotion and introspection so we can look out at the world again and engage with others and do things.

We are, after all, the same person as before the diagnosis. We have probably been incubating our brain disease for over twenty years, and have been aware of slight symptoms for several years. The diagnosis does not change us. It may give us some palliative treatment that eases the effects, and it may enable us to get some support when we need it.

But we are the same person. The same things give us joy and make us smile. We like the same food and drink. We can make choices just as we could a year earlier. For better or for worse, they are our choices and we must be allowed to continue to make them.

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As the disease progresses we will indeed suffer at times. We will suffer knowing that we can no longer do or say what we used to. We will need some help now and then. 

But we are still inside, so you need to make the effort to reach into our minds and our memories and meet us where we find ourselves. It may not be the world you know, but please just come with us. 

Don’t tell us we are wrong. Or we shouldn’t do or say this or that. Just come with us into our reality as we recede from yours.

The end is far off; the disease usually takes many years to debilitate us. Help us to do what makes us smile while we can, rather than slinking off into a dark corner to be forgotten. There are times for all of us when things get too much and the fog descends. 

Don’t ignore us when that happens. Just reach out and hold our hand and listen.

Couple holding hands

 

 

Fake news: lies, damned lies, and statistics

“Start with the patient and work backwards.”

Roy Lilley’s signature phrase at the moment. And rightly so.

Ccg? Acute trust? Mental health trust?

They all start with themselves and do what is easiest for them.

They take the path of least resistance … for their own organisation.

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They sit behind walls and look for the simplest to implement. The cheapest. The ones which require least effort and change.

I am really sorry to have to write this. I know there are exceptions. I know there are some organisations that really try hard. They innovate. They change to meet patients’ needs.

They start from the patient and work backwards.

….

Here are some examples of what happens round here.

Four peer support groups for young onset dementia and for carers are closing. 

The trust says they were run voluntarily by their staff, who are soon retiring. 

The trust says this is after a review.

The trust says there is no longer a need for specific groups for young onset. 

The trust says there are now sufficient other opportunities for those attending to find similar support elsewhere. 

The trust says they have consulted with those attending these groups.

The trust says that only cognitive stimulation therapy courses show any evidence for clinical improvement. 

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They are also going to merge the (tiny) young onset service into a single age service, following a review.

They are now providing really valuable home crisis support teams. (Note, crisis. Not before crisis happens!)

They say (seemingly proudly) they have even provided a few beds in their mental health hospital for patients with dementia. (Having closed a dementia ward recently.)

So, where does that leave us?

Well, the group participants were told the groups would close. Then at another meeting someone attended and asked how they felt about this. They told her. The groups were the only support they got. They loved them. They hugely benefitted from talking to peers with dementia. One person was in tears. Nowhere else did they get that sense of trust, that honesty, and that understanding.

The trust says the groups are going to close.

The trust says that there are sufficient other support groups for young onset dementia that their own groups are not needed. There is just one, the DEEP group in Shrewsbury, attended by sevenm of whom just two go to the closing group.

There are 6,500 people living with dementia in Telford and Shropshire. So around 250 aged under 65. 

The evidence for cognitive stimulation therapy, referred to bu the trust, actually shows little change in cognitive ability, but big improvements in social confidence and wellbeing. Just what peer groups provide.

Research around the efficacy of peer support groups for plwds has produced evidence of increased wellbeing, confidence, social engagement, sense of self worth. They allow plwds to re-narrate their lives in their new circumstances post diagnosis. (And positive social return on investment: SROI.)

Subjective comments (from research and from anecdote) show that peer groups, especially when run by plwds for plwds, or by carers for carers, are the most valued and valuable opportunities people can have.

There are no other peer group opportunities for plwds other than dementia cafes and the like attended generally by a few plwds further on and less able to communicate and less independent. These are not groups younger onset people want to go.

Yes, we have a DEEP group project starting now in Shropshire. It’s funded by a national CIC not a local ccg or provider.

There has been no consultation over the change of dementia service to all age. We who live with dementia have not been involved, asked, even informed. We think we will lose the expertise that the one remaining under 65 service nurse has. 

This is disgracefully lazy and selfish.

They treat us with contempt.

They do what they want. What suits them.

They ignore the research evidence which doesn’t suit them.

I got a letter from the Council and CCG the other day, in response to my question to the Health and Wellbeing board about the lack of a dementia commissioning lead (for the last 18 months and the next 12) and the non implementation of our co-produced dementia strategy.

CCG improvement and assessment 2018/19

It told me that Shropshire CCG had last year been assessed in the top rating for quality of dementia care under the Improvement and Assessment Framework. The only two measures relating to dementia are diagnosis rate and care planning/post diagnostic care.

So we have a diagnosis rate of 67%. Yup. Good.

And apparently 90%+ of plwds have care plans.

Eh, what?

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No we don’t. That is not true. That is calling an EMIS summary care record a care plan. The framework requires an annual face to face review re dementia, recording the patient’s wishes for the future, the name if their carer(s), and communication and coordination arrangements for secondary care. 

Are QOF codes being ticked when they shouldn’t be? Or is the whole recording of care plans a fake? 

And for God’s sake, how does this mythical care plan equate to post diagnostic support?

This is pure gaming in a system which is based on numbers, not quality, and certainly not What Matters To Us.

So don’t start quoting how great you are. It’s just emperor’s clothes again. Post diagnostic support? There isn’t any.

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….

These commissioners and providers still act as Gods who believe they know what we need and decide what we can have.

It is appalling that they can ignore national models of good practice. Ignore the people who have the disease. Ignore research evidence. 

We have a disease that cannot be cured, or even slowed. The only thing that you can do for us is help us to live well while we can, to not withdraw, to be able to engage in our communities, and to do what makes us smile.

That saves you money. It makes society a better place. 

And yet too many of you remain behind your walls and take the easy way out.

Start with the patient and work backwards.

(Thanks Roy)

Be A Dementia Friendly General Practice

I want to talk about what makes a General Practice, where we go for most of our healthcare, dementia friendly.

I was diagnosed with mixed dementia nearly five years ago, aged 63. I asked my GP twice to be referred for diagnosis, in previous years, but he said there was no point because there was no cure or treatment, and nothing would change with my medications. What was the point of knowing?

Third time round, two years later, I insisted. After lots of scans and tests I was told I had both vascular (which I expected) and Alzheimer’s (which shocked me).

Result. Donepezil. The drug that woke the rest of my brain up to compensate for the diseased parts.

That same GP is still telling patients the same appalling story. 

I know this is changing across the country, but GPs must learn that we need to know of we have dementia, or something else. Almost everyone is relieved to know, because they can at last understand their symptoms and get on with living.

Of course dementia is not welcome, but just think how your thoughts and whole life become infected when you gradually find it difficult to do the things you have always taken for granted. 

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Doctors are not gods. Patients need to be, and have a right to be, in control of their lives.

So, doctors, when a person under 65 or 70 walks in and tells you about cognitive difficulties, remember it might be dementia. Help them find out. Don’t tell them you lose your keys too: it’s just getting old. Don’t assume it is depression. Or stress.

Now, practice staff, including doctors of course, do you talk to the person beside you or to your computer screen? 

I remember one doctor who did this right through a consultation, some years ago. But just last year a practice nurse did it to me. I had been called in for a follow up to a blood test, but she could not work out why. And instead of turning to me to ask me she just stared at the screen and scrolled through, muttering and ignoring my attempts to explain.

 

This, for anyone, is rude. It blocks communication. It is dismissive. I became angry and shut my mouth and thought of something else till she turned to me. Eventually she said ah yes, we didn’t need to see you did we. 

For a person with brain disease, who struggles to hear, to decode what they hear, to create meaning from a string of words, it is essential that they see the face, mouth and eyes of whoever is speaking. 

It is essential that you staff make a connection. Smile. Put the person at ease. Any sort of anxiety causes instant confusion and fog, and you cannot remember words, or why you are there at all.

Take time. ‘Seek first to understand, then to be understood’.

Receptionists are the gatekeepers, and the face of the practice. Smile. You may be under pressure. It may be a bad day. But the patient is in front of you because they are having a bad day too. Maybe a bad year. And your job is to help them, not make them feel guilty.

When I arrive and sign in the screen either gives me a green tick, or a red cross. “Too late. Go to reception.”

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Dementia, believe it or not, affects awareness of time. It affects memory. It affects your ability to sequence things. So it is no surprise that I increasingly arrive late for appointments, or just miss them. Yes I get text reminders. The hospital ones demand so many button pushes that I want to smash the phone.

But what is the good of a reminder if you have a memory of a few minutes or less. Or if you see a note you write yourself on the fridge white board every day but ignore.

I arrive one minute late. Red cross. Late. Go to reception.

I arrived seven minutes late. Red cross. Late. Go to reception. Receptionist is busy. I wait two minutes in a queue. She tells me I am ten minutes late so I have missed my appointment. I say no, I was seven minutes late. She sucks her teeth and sighs and says take a seat then.

How do I feel? Annoyed. Treated like a naughty child. Am I able to relax and think about what I am going to say to the doctor? No.

Get the system changed. Be kind. Be compassionate. We don’t go to a doctor or nurse for fun. It’s because we need help or advice or comforting.

And by the way, it’s a bit rich being told off for being a few minutes late, when the doctors usually run half an hour late. You just expect us to soak it up, and we do. Because we have no choice. But if we don’t mind waiting, you shouldn’t either. Let’s be equals as human beings and trust each other.

….

Is your waiting room friendly? Is it lines of uniform chairs, or a variety of colours and heights and designs of seats? Does it feel like a prison meeting room or a friendly sitting room?

Do the signs help the patients? One practice I visited had staff names on the wall beside the door, not on the door. Which side did it refer to? 

The name signs were tiny, high up, and a dirty brass colour font on brown. Not large, contrasty, and at 160 cms height. And in the right place.

Another practice uses handwritten names on paper, stuck with sellotape or bluetac. They change around seemingly daily, so we don’t know where to go. Confusion puts us on the back foot before we start trying to explain why we are there.

Does your practice have notices of all sorts everywhere, in corridors, on the entrance door, on the waiting room walls? Do you have racks of useful information leaflets?

Does anyone ever look at them? To a confused person they are just confusing, and reinforce the knowledge that they can no longer understand all this information in front of them. Get rid of it all. If a patient needs information give it to them when you meet them. And explain it.

Do you have a record of every unpaid or family carer in your Practice list? Does it flag up when you pull up their notes? Do you make a point of asking if they are coping, or if their health is suffering because of their caring work? Carers of people with dementia have worse health than those they care for because they don’t look after themselves. So do it for them.

Care plans. Let’s agree that the EMIS (or other) in-house system does not provide a shared plan for living. I think that GPs round here regard (perhaps for QoF points) the system record as a care plan. In this way Shropshire claims 95% of patients with dementia have a care plan! Well sorry. This is not a shared plan for how to live well, and how to meet a person’s needs regarding ‘what matters to me’. So let’s do meaningful plans. The doctor doesn’t have to lead on this, just contribute. But someone in the practice has to be responsible. 

Do you offer double appointment slots? I bet you are saying yes, of course. But do you publicise these? Do you tell all patients living with dementia that they can book a double slot? People living with dementia often need extra time to remember, to think, to fond the words, and to explain. And you will need extra time to understand what matters to them. Please just offer doubles. Better to have a few minutes free at the end and catch up (or breathe deeply) than to rush and end up later for the next appointment.

Are your staff, including doctors, trained to understand and work with people living with dementia? I mean tier two in the dementia skills model. They should be. Because if they don’t understand how can they possibly provide compassionate, person centred care?

And dementia friends awareness is not, repeat not, training. It is just awareness. A brief introduction.

Do you play music in the waiting room? Try asking people with dementia if they find it relaxing or too loud or if it interferes with their thoughts and preparation for their appointment. What’s wrong with quiet?

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So, there is a lot you can do to make it easier for your patients who live every day and every hour with their dementia to get the help, care and understanding they need and deserve in order to live as well as they can.

And remember: 25% of people with dementia only leave their homes once a month. There’s a good chance it will be you who they visit. Make it a good day for them.

Dementia Dos and Don’ts in hospitals

Here is a list of everything I can think of that hospital staff should know, when they work woth people living with dementia. I think it should be in a leaflet that every member of staff learns by heart!

If anyone wants to use them for staff training, please do.

……..

Don’t ask a plwd when they last ate or drank before an operation. Find out from a caregiver and write it down for the person living with dementia to show all other staff who ask. (At least five are likely to ask.)

Don’t ask a plwd if they have had a drink this morning…if they cannot remember they will say yes to please you.

Don’t ask if a person living with dementia wants a drink. Just provide one, within reach. Make sure it is a drink they like.

Always tell a person living with dementia your name, your role, and explain what you are about to do.

Always look at a plwd when you speak to them, and be at the same eye level.

Always make sure they are looking at your face when you speak. Get their attention first.

Try very hard to smile when talking with a person living with dementia. Smile with your eyes and mean it.

Don’t ask a person living with dementia about their medications and health history. It will be in front of you in their notes or letters. Do confirm these things with the caregiver, if the plwd cannot do so reliably.

Don’t just talk to the caregiver. Talk to the plwd, include them. Don’t treat them as if they cannot understand. They may well do so if you take your time.

Don’t shout or talk very slowly, or in a patronising, infantilising way. Plwds are not children. 

Don’t ask a plwd with poor memory to compare their pain with yesterday. They cannot remember!

Do use the Abbey pain scale to assess pain if the plwd cannot communicate this.

Don’t tell a person living with dementia to shut up or to sit down, or to stop wandering around. They want answers to questions, and they need to be reassured. They may be walking because they imagine they need to get somewhere; go along with them, or divert their attention.

Do give plwds something to do. Twiddle muff, doll, toy, a game, a simple task…lay the table for tea for example.

Do find out about the person living with dementia from their This is Me leaflet. Make sure this is on display beside the patient’s bed, or ask to look at it at an OPD appointment before you start the consultation.

Don’t ask direct questions of a person with more advanced dementia. They may not be able to decode it or find the memory to answer it. Find indirect ways in to the subject you need to know about.

Give a plwd as much time as they need to process what is going on, or what you are explaining to them. Wait until they do understand, or at least are calm and accepting of what you are about to do.

Don’t move the bed and person living with dementia, even within a ward. Find an alternative. 

Don’t discharge a plwd patient after 3.00pm. Especially not at night.

Do arrange OPD appointments so that a plwd will not have to wait before going in. This will usually mean at the start of a clinic, morning or afternoon.

Don’t expect a plwd to look after their own medicines. But do get them right. Plwds often have several co-morbidities and therefore several medicines.

Don’t ask plwds to choose food menu items the day before! They may be unable to make a choice at all, so check This is Me for dislikes and preferences.  And they won’t remember what they chose.

Do always use the least restrictive approaches to DOLs. It takes time to care; give it.

Don’t tie plwds to their bed.

Don’t raise bed side bars to keep them in bed; it’s infringing their freedom and may cause them to fall if they climb out.

Do always give the plwd patient the time it takes for you to understand their behaviours. 

Don’t restrict plwd patients’ movement because it suits you. Accommodate them if at all possible, And it usually is.

Don’t call behaviours you cannot understand challenging. The plwd is not challenging you on purpose. They simply may be in a different reality to yours. It is only challenging because you don’t understand it.

Xray machines are threatening and noisy and frightening. Take time to reassure and comfort before starting. 

Don’t assume that because a person has dementia they cannot remember anything. But don’t assume either that they can. Check first. 

Every person with dementia is different. Don’t make assumptions about stereotypes. 

The brain disease underlying dementia can occur at any age. It is not a result of ageing.

Don’t tell a person living with dementia to arrive for an operation or procedure at 7.30 and make them wait hours before being operated on. Do make sure they are first up.

Don’t keep plwds waiting on a trolley in A&E. Move them up the queue. And find them somewhere quiet, to avoid their anxiety and distressed behaviours.

Don’t provide car park pay machines with shiny tiny buttons in a tight cluster, and at about four feet off the ground. Plwds and others with cognitive impairment cannot use them. And then they get annoyed, and distressed, and curse the hospital.

Don’t put black or dark floor mats at entrance doors. Plwds may see a hole and refuse to cross it.

Don’t have black or dark stair treads. Plwds may fall down them.

Do place door signs, like for toilets or consultation rooms, at five feet, in large print, on contrasty plaques. 

Do put the name of a room on the door, not on the wall beside the room.

Do keep offering plwd patients snacks throughout the day and evening. Don’t worry about how healthy these are; just get food into them! Make the snacks dainty and tasty.

Don’t expect a plwd to remember or follow your instructions, for example about not getting out of bed. So don’t blame a fall on the plwd for not following instructions.

If the plwd has a butterfly sticker, make sure you put one on the ID bracelet too.

Do make lighting bright during the day and dark at night.

Don’t park plwds in a discharge lounge for hours. They will be disorientated and become distressed.

Do get inside their world. Find out where they are and join them. 

Don’t tell a plwd that they are wrong, time and time again. In their world they are right. Go with them. It may seem wrong, but just do it.

Do place drinks and food in easy line of sight, and within easy reach.

Do address a plwd by their preferred name, not by your preferred alternative, like matey, or dearie.