Dr Gemma Jones Behavioural Staging Model of Care
Dr Gemma Jones, author of ‘Care Giving in Dementia’, defines ‘ideal care’ as: –
“The attitude and supportive actions which make a person feel valued, safe, nurtured and cared for, regardless of their illness, the stage of their illness, irrespective of their gender, race, creed, past achievements, or their shortcomings as a human being.”
At Aucklands we have introduced the Dr Gemma Jones ‘behavioural staging’ model for meeting the needs of older people with dementia and this is possibly quite different to the methods used in many care homes. We have prepared this brief guide to help you understand the guiding principles behind what we are trying to achieve. The diagrams and information contained in this document are based on Gemma Jones’ training course, ‘Communication and Care-giving in Dementia: A Positive Vision’.
Dr Gemma M.M. Jones is a freelance educator about care-giving in dementia issues and a consultant on the design of specialist dementia care facilities, a guest lecturer in psycho-geriatrics at the Hague University, and a founding member of the first Alzheimer Café in the UK, in Farnborough, Hampshire.
Gemma Jones has a background in cell biology, gerontology and nursing; she qualified as a Validation Therapist in 1985. She is a member of the workgroup for the Nuffield Council, currently examining ethical issues related to dementia.
Her interests involve making a link between visuo-perceptual deficits in Alzheimer type dementia and finding the best ways to provide accurate and useful information about dementing illnesses.
She has taught extensively in the Netherlands, UK and Canada; publishing over 40 articles. With Dr. Bere ML Miesen she has co-edited volumes 1-4 of Care-giving in Dementia and translated Dementia in Close up, to help identify a knowledge base for supporting the professionalization of dementia care.
More information about Gemma Jones is available here – www.thewidespectrum.co.uk/
Since the process of dementia usually consists of slow but progressive changes and can last up to 20 years, it becomes necessary to have reference points along the way. ‘Behavioural staging’ is used as a kind of ‘shorthand’ way of describing this, so that the person’s current needs and abilities are seen within the larger context of what is happening to them. Behavioural staging is also a method of helping carers focus on the many ways in which a person with dementia tries to adapt to their own changing circumstances. It does not take away from the individuality of how a person experiences or reacts to their illness, but only makes care is aware of where someone is in this complex illness. In this sense, the staging is the same as for any other illness, from chickenpox to cancer, which are also described as having a start, middle and end. We can then utilise helping strategies that are most appropriate to each particular stage, to help our residents to live as full and enriched lives as possible.
Behavioural staging helps us to anticipate what we can expect to see as the person’s illness progresses through the different stages and to identify when changes might be about general ill health or those associated with old age rather than the person’s dementia.
We set out below a brief overview of the four behavioural stages: –
Stage One – Malorientation, mild confusion
- A good social facade to hide short-term memory losses. Appear to be orientated. Attention span reduced.
- Aware of ‘mistakes’ such as misplacing or forgetting things and try to hide them.
- Frightened of becoming ‘crazy’, losing control and independence. Exaggerating independence to mask own fears. Frightened by the confusion of others.
- Difficulty finding some words, may lose the ‘thread’ of a conversation.
- May be angry, defensive, blaming, tense and anxious.
Stage Two – Time Confusion, moderate confusion
- Visibly disorientated. Loss of sense of chronological time, not always aware of season or time of day. May refer to deceased persons, e.g. parents being still alive.
- Becoming disinhibited. Losing sense of social etiquette and starting to say what they are thinking.
- Language starts to become more obviously affected.
- May lose the ‘thread’ of a sentence. Invent new words to substitute for lost ones.
- Attention span very limited. Keep misplacing things.
- Less aware of their memory deficits and ‘mistakes’ so less tense. Retreat to memories of happier times. More relaxed than in Stage One.
Stage Three – Repetitive motion, severe confusion
- Verbal ability is limited, usually short phrases, sometimes just whistling or singing.
- Phrases such as ‘Nurse, nurse’ or ‘help, help’ are often repeated throughout the day.
- Efforts to initiate verbal contact are minimal.
- Severe sensory deficits, especially visual.
- Repeated movements, such as rocking, tapping, patting, polishing or rolling up their dress.
- Often sit or lie down for much of the day.
- Often recognise family members as being familiar, but usually cannot retrieve their names or their relationship to them.
Stage Four – Vegetation
- Appear to be sleeping for most of the day.
- Muscles are loose, with almost no body movements.
- Do not appear to recognise family members.
- Seem to withdraw from the outside world for most of the time.
- Still able to respond to loud noises and unusual stimuli, but mostly to music, a friendly voice tone, favourite foods or a massage.
At Aucklands Residential Care we have changed our views of behaviour in people with dementia, from: –
‘People with dementia often behave abnormally in a normal world’,
‘People with dementia behave (relatively) normally in an abnormally perceived world’.
The assumptions behind what we do.
All behaviour has meaning.
In dementia, a person’s behaviour or behaviour changes are never seen as senseless, crazy or stupid. Our skilled staff can often piece together the meaning of a given behaviour in the person with dementia, taking into account previous events, triggers, family information or observation about what the person is trying to do. Reduced logical thinking ability and memory abilities may prevent a person from being able to have insight into their behaviour. Reduced verbal ability can make even attempts to explain it impossible.
Having dementia does not preclude happiness, but being fearful always does, in all persons.
You take yourself with you into the dementia process in most types of dementing illness. That is to say, a person’s personality, norms, likes and dislikes and life history, attachment experiences and influences, will continue to account for a great deal of a person’s behaviour. Although some literature still refers to a loss or change of the personality in dementia, we take the view that it is often the presence of fear that masks core personality. Fear is accompanied by multiple behavioural changes. Good care always notices and tries to allay fear. Where fear has been addressed (and there are different types of fear in the different stages of dementia) a person’s personality is more readily visible again.
Basic ‘life history’ and ‘attachment’ history information is crucial to providing the best ongoing care for a person with dementia.
Lucid moments are possible at all stages of the illness, though with less frequency as the dementia progresses. More advances in neuroscience leave scope for the occurrence of lucid moments through new understanding of how brain systems are interconnected and how cell networks function and can regroup. In Alzheimer’s disease, nerve cells do not die immediately but live with slowly accumulating damage. Some brain cells respond to compensate for damage, some cells even regenerate. Not all cells in any given area are damaged or die in Alzheimer’s disease. The above points also help to explain the intermittent nature of some types of cognitive errors made in early stages of dementia.
‘Perceptual errors’ and ‘misperceptions’ are different from ‘hallucinations’. Although all of these can occur, perceptual errors and misperceptions are sometimes mistakenly reported as hallucinations. This misreporting can have potentially serious consequences for the person with dementia. For instance, simple visual interventions such a sight tests, increasing lighting levels and offering additional reassurance may not be tried. Also, since hallucinations are often linked with psychotic illness, anti-psychotic medication may be inappropriately prescribed.
If this person did not have dementia, what would they choose to do for themselves? Care staff act on behalf of a resident with dementia when they are no longer able to carry out certain functions or tasks independently. This means that our staff need to keep this question foremost in their thoughts and also ask, ‘What do they respond most positively to now?’
Diagnosis and observations. When signs of memory and/or thinking difficulties or disorientation are observed it is important to get a correct diagnosis as soon as possible so that reversible causes, e.g. infections, dietary insufficiency, thyroid imbalance, diabetes and the risk of strokes, can be treated. Our staff document their observations carefully at all times and this evidence can be used when a diagnosis is sought, questioned, re-evaluated, or when a person’s condition changes.
Stage specific and dementia-specific care, as opposed to trying to treat people in different stages of the illness the same way, is the vision of dementia care promoted at Aucklands Residential Care, given the knowledge base currently available. It is expected that in a decade, much more knowledge about rarer types of dementia will be available and that care can be refined accordingly.
Good dementia care can be thought of as ‘palliative care’ in the widest sense, according to the World health Organisation definition. Since dementing illnesses are incurable from the time a diagnosis is made, the person can be thought of as requiring care to promote well-being, quality of life and comfort.
Our belief is that older people with dementia need to feel secure and comfortable if they are to get the most out of their lives and this is central to the way that we care for the people who use our service. We work closely with residents, their families and friends and the various professional’s who may also be involved in supporting them to gather as much information as we can about the person’s personality their likes, dislikes, life history and experiences and influences as we believe that this information will help us to better understand the persons behaviour. To add to this holistic approach, we will be offering family and other carers access to a free one day course that explains the staging process so that we can all, work together to optimize the health and wellbeing of loved ones.
For many people who have dementia their behaviour is influenced strongly by fear that is created by them having a deep sense that something is not right with their thinking and memory. It is this fear that often creates behaviour that can be hard to understand in a person who has dementia. As the person has reduced logical thinking ability and their ability to memorise and verbalise feelings and thoughts is often affected, attempts to try and explain how they feel are impossible. At Aucklands our staff are trained to recognise and allay fear in the residents we care for so that their personality is more readily visible and we can identify what abilities have been least affected by the person’s dementia and work to maintain these, whilst supporting them in the areas that are the weakest.
We use the validation method, a practical approach based on knowledge about and empathy for the progressively isolating experience of people with dementia. This emphasises communication techniques based upon whichever stage the person with dementia has reached. The principal assumption underlying validation is that all behaviour, no matter how seemingly inappropriate, has meaning and is not helpfully understood by over-simplistic notions of being ‘crazy’ or ‘mindless’.
The goal in using validation methods is to help a person with dementia to be as happy as possible, whatever their level of functioning, by reducing feelings of fear and loss, working with abilities and functions that are spared and supporting those abilities and functions that have become weakened.
The word ‘validating’ comes from counselling psychology. We will seek to validate a person’s feelings in the clearest possible way, to reflect their feeling directly back to them as we observe it, e.g., ‘You sound/look/seem upset or worried.’ Validating feelings can make the resident feel better because it shows that someone was interested enough to notice their situation and to do so accurately.
For example, a resident in Stage Two is calling out for help. She informs the staff, ‘Please open the door for me because I have to go home. My mother and father will be waiting for me for tea and they will be worried if I am late.’
Example non validation responses; –
‘This is your home now and you live here.’
‘You can’t go home now, it’s too late. You will have to wait until tomorrow.’
‘I can’t open the door to let you out as I haven’t got a key.’
‘You are 89 years old and your parents died long ago. You live here now.’
‘I called a taxi for you 10 minutes ago. It will be here in 20 minutes so go and sit in the lounge while you’re waiting for it.’
‘Don’t worry about it. You sit down and I will make you a nice cup of tea.’
Example validation responses; –
‘You are missing your parents and home? You would like to be with them/there now?’
‘Tell me about your home/your parents?’
‘This place doesn’t feel much like home does it? What do you miss most?’
‘Do you think if we sat and talked together you might feel better?’
There is no book in which staff can look up, ‘How to have a perfect day with someone who is two years and three months into their illness.’ However, we can offer guidelines based upon an understanding of which abilities are most spared and which are becoming fragile. These will be used to provide a ‘toolbag’ from which staff can make a selection. This toolbag contains a range of tools, such as communication options, care strategies, activities, interpersonal and group activities, which can be used skilfully and creatively in caring for and working optimally with people with dementia and their families.
Communication needs to be increasingly clear and simple as the illness progresses. Voice tone and facial expression provide cues which can help a person to understand the message through other sensory channels when comprehension may be limited.
We believe that if a resident can remain oriented, they should be helped to do so. If they request to be oriented, they should be helped to be oriented. However, if they cannot remain oriented or resist being oriented then our perception of reality should not be forced on them.
Where a resident who is disorientated in time asks, ‘Where am I?’ they might mean this literally in terms of ‘What is the name of this place?’ It could also mean, ‘Where am I in my life?’ wanting to know whether they are young, middle aged or old.
Consider these comments from the residents’ perspective: –
‘These people that I don’t know and have never met before are trying to kiss me and are pretending to be my family. I soon put a stop to that.’
‘The bells go off all the time in this place. I need to get out of here in case there’s a fire, but nobody understands.’
‘I looked everywhere but I could not find the toilet, then these two strangers came along and forced me to take my clothes off because they were wet and they said it did not matter. Of course it matters, I was so ashamed.’
‘I can hear my father now. ‘Manners maketh man’ he used to say and we children were always on our best behaviour at the meal table. These people make me sit with this old woman who spills food all down her front and spits everywhere. Then there is this young girl who keeps trying to put food in my mouth and force me to eat.’
‘Why do they call me Johanna? No-one has ever called me Johanna. I shall take no notice and refuse to answer. My name is Jo.’
By asking questions about a resident’s story (as they perceive it) staff show that they are interested in a resident and trying to understand. Asking questions does not mean that staff agree with what the person is saying, but rather that they would like to know their perspective. Asking questions and giving the resident their focused attention means that staff can build trust and helped calm the resident when they are distressed. It can also provide valuable information for care giving when staff have information about the residents perspective on the situation, regardless of whether it is accurate or not. Listening to what people with dementia say tells us a lot about how they cope with cognitive impairments such as memory loss, thinking, attention, reasoning, decision making and dealing with concepts.
Bookcase model of memory
When our memory is normal, we access memories from all types of memory storage systems at the same time. The factual memory storage system stores memories according to however chronological time is perceived. The emotional storage system stores memory according to their emotional flavour. Time is not relevant to this system. Categories seem to include memories of people who loved and cared for you, children, favourite places, pets and negative authority figures.
Our experience of ‘remembering’ seems like a single thing since we cannot feel the process of different areas being accessed. In dementia, it becomes more difficult to access factual memory as damage to the brain increases. Emotional memory is intact, but limited in the information it can provide without accurate details about dates, names, places etc.
The emotional memory is the primary one being used as the factual memory becomes weakened. This emotional memory system is operating on its own instead of in tandem with the factual memory, therefore the information it provides is more vague, relying on feelings rather than on exact factual details. For example: –
‘Who is this person?’ = ‘Who does this person feel like all remind me of?’
‘Where am I?’ = ‘Where does this place feel like or remind me of?’
‘What is happening?’ = ‘What does it feel like is going on around here?’
Behavioural stages and how we can provide help and support.
Stage 1 Mal-orientation
factual memory bookcase is wobbling but not collapsed (limited learning/insight still possible) (See also Appendix 1 re Bookcase model)
people are trying very hard to be normal, often have some insight into own mistakes
frightened of losing control, or being thought of as crazy.
STAGE 1 KEY HELPING BEHAVIOURS
keep your distance/until you are invited to get closer
don’t expose their weaknesses or errors
maintain social etiquette/manners
learn to work with all feelings; especially fear and anger
learn to acknowledge/validate the feeling/don’t avoid it/don’t take it personally
generally, whoever is nearest ‘gets it’…it’s meant for the whole world- not you.
Stage 2 Time Confusion
the factual memory bookcase has collapsed; the emotional bookcase is dominant now.
disorientation in time (and often place) is very evident (often out by several decades).
cannot confabulate or lie anymore as memory ability is decreased and disinhibition occurs.
noun finding difficulties will be very obvious, and losing the thread of a thought/sentence
‘Incontinent of thought and feelings’
STAGE 2 KEY HELPING BEHAVIOURS
encourage conversation, whatever the person wants to talk about, don’t feel obliged to change the subject if it isn’t ‘happy’. Acknowledge the person’s feelings and life experience. Resist correcting mistaken facts, reminisce, give person a chance to share their wisdom (e.g. ask questions like: What advice would you give to parents about disciplining children, people wanting to get married, people who want to move overseas, people who are having difficulties?)
Use touch, eye contact, music, singing movement, to find a buddy in the same stage.
Stage 3 Repetitive Motion (and speech)
frequent movements and words/sounds/phrases (often expletives or swear words)
very poor vision, eye movements and eye contact: weight often bears on legs, but don’t usually walk independently; double incontinence may start.
STAGE 3 KEY HELPING BEHAVIOURS
place yourself and important things in person’s visual field, encourage whatever speech is there, even if only swear words, ‘mirror’ their movements, use touch, music, singing and movements to replace more verbal types of communication.
Stage 4 End stage withdrawal (like a kind of in and out of hibernation)
appears withdrawn like going in and out of hibernation
eyes often close as if sleeping, little movement or vocalization
Still respond to positive stimulation i.e. touch, nurturing tones, music
STAGE 4 KEY HELPING BEHAVIOURS
positive sensory stimulation, touch nurturing voice tones, tapping rhythmically to music whilst holding their hand, hand massage
Behaviours when safe/comfortable
Stage 1 Malorientation (accept help: trusted other)
- confides in ‘trusted other normal adult’ when upset (usually only one carer or family member), hence they do not blame others for errors
- admit to memory difficulties, and to being fearful
- ask for help when frightened, and appreciate reminders and cues to maintain normal routine
- don’t use excuses or blame so much to cover up their own mistakes
- engaging, affectionate
- tries to present their ‘preferred self-image’ and their best adult social etiquette
- enjoys group outings and activities
- enjoys doing ‘special tasks’ to help staff
- may try to help people in Stages 2 & 3 (in group activities), as long as they don’t have to identify with them because their ‘trusted other’ affirms them
Stage 2 Time confusion (feel found)
- think that they are at home or work (even in a care setting)
- relaxed, spontaneous, disinhibited, fun, affectionate
- sing, dance, recite poems, prose, prayers readily
- mistakes caregivers for others in their life
- if they have a ‘buddy’ in the same stage, they care for each other all day, and do not try to cling to others
- engage with familiar routines, people, objects
- try to help with anything that they can
- sometimes think they’re not being paid for work done
Stage 3 Repetitive Motion (others provide real stimulation)
- maintain a larger repertoire of words/phrases
- try to locate others to have eye contact
- often sing, hum, tap rhythms
- will hold hands with others
- will respond enthusiastically to simple questions
- will participate in groups with sensory stimulation activities, with movement & minimal speech demands
- still try & feed self (often manage finger foods slowly)
S4 End stage withdrawal (feeling care & attention)
- still trying to make eye contact, lip movements (some sounds), hand squeezes.
Behaviours when fearful/uncomfortable
Stage 1 Malorientation (trying to be self-reliant)
- frightened of losing control, independence of ‘going crazy’, of not appearing normal
- denies/blames others for their ‘thinking’ mistakes
- seem to be on constant guard of others
- may be mistrustful, suspicious of virtually everyone
- may request help, but then resist or decline it trying to show they are managing fine on their own(e.g. multiple phone calls to family member in night)
- defensive body posturing is very obvious
- confabulation, social facade used to hide mistakes
- gets ‘bees in bonnet’(fears) about finances , people who (supposedly) don’t like them; ‘hiding and hoarding’ may occur
- very threatened by the presence of people in Stages 2 & 3
- may try to solve perceived problems by complaining to authorities (police, inspectors, bank manager)
- reluctant to engage in social activities
- if in care home, often blame family life for this.
Stage 2 Time confusion (feel lost)
- try to cling to family or staff all day
- may mistake care home for a hotel and be fearful they have no money to pay for things
- leave to ‘go home’ (even if in own home), or work
- often get lost and in other residents rooms
- crying, distressed, angry if staff try to stop them
- Search, ask after, and call out for people they are missing (mostly but not always parents)
- since they cannot hang onto things (like handbags), or personal items anymore-anything that looks familiar is mistaken to be their own and taken
Stage 3 Repetitive Motion (isolated/self-stimulating)
- only few words used, call out (for help) all day
- making own stimulation with moments in the air, with own clothing, on table-tops
- repeated words and movements increase in frequency and severity when distressed
- screaming may start
- fixed start for long periods of time
- sometimes very difficult to get eye contact with
- often need to be fed
Stage 4 End stage withdrawal (feeling abandoned?)
- passive, more difficult to get any contact.