achieving real outcomes in dementia care : a case of alice ... · achieving: real outcomes in...

David Sheard (Dr.)

Chief Executive/Founder: Dementia Care Matters

Visiting Senior Fellow, University of Surrey

© Dementia Care Matters 2012

Achieving real outcomes in dementia care :

A case of Alice in Wonderland?


Safeguarding = Getting rid of nonsense in dementia care


Alice in Wonderland in dementia care

‘Who are you, said the Caterpillar? This was not an encouraging opening for a conversation.

I hardly know just at present – at least I know who I was when I got up this morning, but I think I must have been changed several times since then.’



‘I wonder if I’ve been changed in the night? Let me think: was I the same when I got up this morning? I almost think I can remember feeling a little different. But if I’m not the same, the next question is, who in the world am I?’



“Everybody says ‘come on!’ here

I never was so ordered about in all my life, never!”



“Who am I then? Tell me that first, and then, if I like being that person, I’ll come up: if not I’ll stay down here till I’m somebody else’............

I am so very tired of being all alone here!”



‘You should say what you mean, the March Hare went on.

‘I do’ Alice hastily replied; ‘at least I mean what I say – thats the same thing, you know’

© Lewis Carroll. Alices Adventures in Wonderland


‘There were doors all round the hall, but they were all locked; and when Alice had been all the way down one side and up the other, trying every door, she walked sadly down the middle, wondering how she was ever to get out again.’


Non sense in dementia care

Laminating newspapers

Hooks = people hanging themselves

Soft toys seen as ‘childish’

Empty environments = care



We all want to live in hotels

Recreating hospitals = safe

Sitting in silence leads to enjoyment

Being bored doesn’t kill the spirit



Inspection without observation

Only nurses giving out medication

Fee reduction when peoples well being restored

The fight to retain ‘them and us’


From Chrysalis to Butterfly:

Achieving: real outcomes in dementia care homes


Safeguarding =

Achieving real positives outcomes


What outcomes are you after?


Dementia Care Matters Achieving Outcomes

The 50 Point Action Checklist

©Dementia Care Matters 2011

Tick one box per item listed below Yes No Partly

Removal of Them & Us Barriers leading to Culture Change

1. Uniforms have been removed and staff look like ‘best friends and not like nurses in charge.

2. All toilets are communal and there are no separate staff toilets.

3. Staff do sit to each meals with people with a dementia.

4. All use of trolleys has been stopped – medication is given out individually from locked cupboards in people’s own rooms. Drinks and meals are served individually.

5. There is a relaxed ‘go with the flow’ feel to the day with no sense of the routines that occur in hospital.

6. Evidence can be seen of Managers modelling person centred care ‘on the floor’ daily.

7. Staff see management as feeling based leaders towards them and use words which describe this when talking about managers.

8. Labelling language in care plans has been removed i.e. words such as wanderer, challenging, aggressive, are banned and staff do not use this language nor ‘talk about’ people in communal areas in front of people.

The 50 point check list



Feelings Matter Most Approaches

9. On arrival people would see, hear and feel immediately it is a feeling based Home within 5 minutes of walking in.

10. Lots of feelings based communication by staff can be seen occurring.

11. Love, comfort and hugs can be seen to be visibly happening when needed.

12. Staff can be seen at times sitting and just ‘being with’ people who live there.

13. Staff demonstrate they know when people with dementia talk about Mum, Dad, kids, school, home and work, it is often not literal but about how people are feeling now.

14. Staff express positive comments about why they work there and the feelings working there creates for them.

15. Staff are able to express the care setting’s one key belief, its one purpose about dementia care.



Evidence of Physical and Emotional Freedom

16. People are freely able to go outside into safe enclosed private areas without needing locks unlocked or having to be accompanied.

17. Families seem to be ‘at home’ rather than as visitors or guests and are visibly significantly involved in the daily life of the setting.

18. Families are visibly accepting people with a dementia’s different realities and appear not to try to force their own reality when they visit. Clear evidence exists that families have been educated in the philosophy of the setting.

19. Staff are not obsessed with risk prevention and health and safety - they meet legal requirements but evidence during the day that their approach is in the context of promoting rights.

20. Staff clearly recognise the importance of people’s emotional memory and their treasured emotional possessions and demonstrate this in their contact with people.

21. Regular use of the outdoors is ensured where outdoors and indoors merge together as one area to occupy people with for example a busy garden, an old car on blocks, washing lines, ‘activity’ based sheds etc.,

22. Limited use exists of anti-behaviour medication – neuroleptics – where this is only as a last resort to relieve acute distress.



Create meaningful ways to occupy.

23. People with a dementia are seen regularly doing domestic activities throughout the day.

24. Some people with a dementia are helped in their reality to ‘do’ a part of a work like job they did in the past.

25. Sensory calming and sensory stimulating items and a variety of their approaches are alternated at different periods of time during the day.

26. Attempts are made not to mix up people with a dementia at different ‘points’ of experience who are fearful of one another.

27. Knowledge exists of how to ‘match’ the right level of activity and occupation appropriate to where an individual is in relation to their point of experience of a dementia.

28. Dolls, prams, soft toys, comfort objects are all available and visible within the service.

29. Massage and other physical therapies occur during the week.

30. Use of sensory fabrics to touch and feel for example velvet, fur etc., are scattered about.

31. Masses of 30 second connections between staff and people who are in the care setting occur – staff look like they know how to be butterflies creating lots of positive moments.

32. Choices of individual music geared to individuals and natural sounds i.e. bird song are introduced.



Focusing on the Mealtime Experience.

33. Meal choice is shown at the time of the meal.

34. The mealtime experience is turned into a social occasion and not a task. Staff are clearly trained in how to keep mealtime conversations going using objects, items in their pockets, perspex boxes on tables which are full of things to talk about including photos.

35. 24 hour visible food is out in public areas and corridors – changed hourly to meet Food Hygiene Regulations, with the aim of encouraging people to eat when they feel like it.

36. Use of smells from cooking and food discussion, food pictures are actively used to orientate people 45 minutes prior to a meal with the aim of encouraging an increase in appetite.

Person Centred Care Planning

37. Care plans show they focus on people’s strengths and not lists of losses and dependency nor on problem based sheets.

38. Detailed life histories – books, memory boxes etc are being used daily by people working and living there.

39. Specialist skills in ‘later stage’ dementia care are evident.



Evidence of a Dementia Specific Environment

40. Positive attempts have been made to reduce the impact of a hotel like environment whilst retaining a quality environment – it looks more like a home than a hotel.

41. Real small-scale domestic living exists i.e. Maximum lounge sizes of 10-12 people.

42. Orientation aids i.e. colour and objects and appropriate signage throughout building exist to enable people to find their way through a range of cues.

43. Corridors exists which are divided into coloured sections or divided up with objects and/or seating to prevent institutionalisation.

44. Corridors are full of ‘activity items – things to occupy’ i.e. on tables and walls, activity boards, sensory areas – corridors seen as areas of stimulation.

45. Untidiness exists with clutter, rummage items all out in lounges, corridors etc., Lounges are full of rummage boxes, open chests of drawers and the rooms are full with all these items out and being passed around.



Evidence of a Dementia Specific Environment

46. Bedroom doors look easily identifiable – very individual with either colour, notice boards or memory boxes by door, whatever works for each person.

47. Pictorial signage on toilets exists.

48. Lounges have sofas.

49. Lounges have artwork and pictures that denote the function of the room as a cue i.e. not confusing pictures unrelated to room function.

50. Bathrooms are not clinical but warm, inviting places to want to relax in – reduction of reflective tiling and glare, been actioned, they appear warm and friendly.

Achieving: real outcomes in dementia care homes The 36 outcomes MOM tool: Measuring Outcomes Matters

This MOM tool is a rough guide to measuring a care homes progress in achieving quality of service and quality of life outcomes. These tools will require further team discussion to ascertain if all team members have the same opinion. The tools can also be used to create discussion amongst team members on each others understanding of the outcomes. Please rate each of the 36 outcomes below using either the management rating tools or the everyday practice tool.

MOM management rating scale (M) 0 = Outcome not commenced/no action plan

1 = Outcome signed up to but not actioned

2 = Outcome at operational planning stage

3 = Outcome being developed by learning/ training

4 = Outcome measurement methods established

5 = Outcome at point of early introduction

6 = Outcome first review / learning actioned

7 = Outcome low level evidence: major work required

8 = Outcome medium level evidence: further work required

9 = Outcome high level evidence: sustainability plan needed

10 = Outcome fully evidenced: sustainability plan actioned

MOM everyday practice rating scale (P) 0 = no evidence

1 = poor

2 = fair

3 = good

4 = excellent

“If I came to your care home today would I see evidence of these outcomes being in place?” Name of Home .................................................................................................................. Name of person/team completing the MOM tool ............................................................ Name of rating scale being used (choice of two) ............................................................. Date of completion ............................................................................................................


Section A - Quality of service outcomes M

0-10

P

0-4 Section B - Quality of life

outcomes

M

0-10

P

0-4

PIECE 1 Beginning with self: achieving through

passion

PIECE 7 Focusing on interactions:

achieving quality of life

Outcome 1 High levels of self awareness Outcome 19 Quality of life guaranteed

Outcome 2 Passion spread across team Outcome 20 Well being increased

Outcome 3

Shared vision in evidence

Outcome 21

Life history valued and

reinforced

PIECE 2 Finding the right people : achieving an

‘attitudes first’ team

PIECE 8 Removing control: achieving a

new culture

Outcome 4

Attitudes valued most in recruitment

Outcome 22

Us and them features

removed

Outcome 5

Emotional labour supported

Outcome 23

Controlling care reduced

Outcome 6

Appraisals measure being person centred

Outcome 24

Positive interactions

increased

Measuring outcomes matters (MOM)



PIECE 3 Motivating stars: achieving the personal

development of staff

PIECE 9 Matching group living:

achieving people fitting

together

Outcome 7

Personal reflection prioritised

Outcome 25

People grouped with

common needs

Outcome 8

Training includes emotional development

Outcome 26

Peoples functional capacity

assessed

Outcome 9

Training turned into action

Outcome 27

Specialisms within dementia

care created

PIECE 4 Developing relationship centred support:

achieving joint learning with families

PIECE 10 Filling up the environment:

achieving a place that makes

sense

Outcome 10

Families clear on model of care

Outcome 28

Disability and ‘home-like’

needs met

Outcome 11

‘Learning together sessions’ regularly held

Outcome 29

Engaging rooms set up

Outcome 12

Families / friends are significant partners in

the home

Outcome 30

Life skill areas in use



PIECE 5 Freeing up the home: achieving positive

energy

PIECE 11 Centring on meals: achieving

an engaged experience

Outcome 13

Task orientation substantially removed

Outcome 31

Adapted quality dining

Outcome 14

The day and staff feel relaxed

Outcome 32

Meal process makes sense

Outcome 15

Mutual regard very evident

Outcome 33

Engaged, positive meals

PIECE 6 Synchronising policies: achieving through

feelings

PIECE 12 Nurturing butterflies:

achieving meaningful

occupation

Outcome 16

Rights upheld to taking measured risk

Outcome 34

Occupation staff’s core

purpose

Outcome 17

Care plans focused on strengths

Outcome 35

‘Activity’ repertoire in staff

has increased

Outcome 18

Feelings assessed before ‘behaviours’

Outcome 36

Butterflies seen in action



Achieving: The Butterfly Lesson

Achieving: real outcomes in dementia care homes is like a butterfly emerging – the struggle is needed and is part of getting

there



‘I’m afraid I can’t put it more clearly – the day is very confusing. When you have to turn into a chrysalis, you will some day you know, and then after that into a butterfly , I should think you’ll feel it a little queer, wont you?’

”One day, a small opening appeared in a cocoon; a person sat and watched for the butterfly to emerge for several hours as it struggled to force its body through that little hole.

Then, it seemed to

stop making any

progress.

It appeared as if it

had got as far as it

could and it could

not go any further.

So the person decided

to help the butterfly:

they took a pair of

scissors and opened

the cocoon.

The butterfly then

emerged easily.

But it had a withered

body, it was tiny and

had shriveled wings.

The person

continued to watch

because they

expected that, at any

moment, the wings

would open, enlarge

and expand, to be

able to support the

butterfly’s body, and

become firm.

Neither happened!

In fact, the butterfly

spent the rest of its

life crawling around

with a withered

body and shriveled

wings. It never was

able to fly.

What the person, in

their kindness and

goodwill did not

understand was this.

That the restricting

cocoon and the struggle

for the butterfly to get

through the tiny

opening, were nature’s

way. By forcing fluid

from the body of the

butterfly into its wings,

it would be ready for

flight once it achieved

its freedom from the

cocoon.

Sometimes,

struggles are exactly

what we need in our

life.

If we were allowed

to go through our

life without any

obstacles, it would

limit us.

We would not be as

strong as we could

have been. We

would never have

been able to fly.

I asked for Strength...

and I was given

difficulties to make me

strong.

I asked for Wisdom...

and I was given

problems to solve.

I asked for Prosperity...

and I was given a brain

and brawn to work.

I asked for Courage…..

and I was given

obstacles to overcome.

I asked for Love...

and I was given

troubled people to

help.

I asked for Favours...

and I was given

opportunities.

“I received nothing

I wanted...

but I received

EVERYTHING I

needed."

Live life without

fear,

confront all

obstacles

and know that

you can

overcome them.


Safeguarding =

‘Take care of the sense and the sounds will take care of themselves.’

The Duchess


Safeguarding =

‘It sounds uncommon nonsense.

..... she sat down with her face in her hands, wondering if anything would ever happen in a natural way again.’

‘It would be so nice if something made sense for a change.’

achieving real outcomes in dementia care : a case of alice ... · achieving: real outcomes in...

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