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.