Dementia Specialists
Our Philosophy / Behavioural Staging Model
Dementia Specialists
We are specialists in dementia care and recognise a person with dementia is, first and foremost, a person – unique and with a rich history of experiences, abilities, skills, knowledge, preferences, desires and personality.
The term “dementia” is used to describe the symptoms that occur when the brain is affected by specific diseases and conditions. Symptoms include loss of memory, confusion, problems with speech and understanding and differ from person to person.
“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.”
Dr Gemma Jones, author of ‘Care Giving in Dementia’
What we do…
We use the persons life story to build a picture of their preferences, lifestyle, history, family, likes and dislikes. Our carers are trained in completing detailed care plans with the help of residents, their family and friends. These plans are used daily and help to maintain the identity and dignity of the person as the dementia progresses, providing important information, such as how they like their cup of tea. Life story supports the person in expressing themselves by talking about their lives and experiences. For those providing care and support, it enables them to see the person rather than the symptoms of the illness and to tailor meaningful activities and daily life accordingly.
We also understand that the activities people carry out in their free time are often the things that they most look forward to and enjoy.
Our Philosophy of Care
Privacy, Dignity and Respect.
We ensure that at all times, Service Users can enjoy privacy if they wish and are treated with respect and dignity. We will ensure the confidentiality of information we hold about Service Users. All staff are trained to knock on doors and wait for a response before entry into a Service User’s bedroom or accommodation; to respect the Service User’s wishes to be addressed by the name of their choice, offer and encourage Service User choice in what to do, wear, eat, drink etc, provide sensitive personal care with patience and understanding and to constantly remember the fact that Aucklands is the Service Users’ home, and their wishes and wellbeing are paramount.
Fulfilment and Choice.
We believe in actively supporting the independence of each Service User and their right to use their freedom of choice, thereby contributing to their sense of autonomy and fulfilment in life. We will encourage these abilities for as long as possible. However, when cognitive and memory abilities become more fragile, we will not insist on a ‘reality based’ approach to care but rather use ‘validation methods’.
The goal of this vision of care is to help Service Users to feel as happy and safe as possible, for as long as possible, within a supportive environment with persons of a similar cognitive ability.
Where the individual is assessed as being unable to make appropriate decisions and has no available relatives or representative, we will provide opportunities for advocacy through external agencies. Our practice is shaped by the underlying philosophy of the Mental Capacity Act. We ensure that individuals who lack capacity are the focus of any decisions made, or actions taken, on their behalf.
Holistic Care.
Equality and Diversity.
Behaviours that may challenge others
Dementia affects approximately one in every 20 people over the age of 65 and one in 5 people over the age of 80. Some people are diagnosed at an earlier age than 65. Dementia is a non-specific illness in which an individual suffers a significant loss of cognitive ability, which may impact attention, language, memory and problem-solving. It may be progressive, the result of long term decline due to disease within the body, or static, and the result of a unique brain injury.
Given the specialist care that needs to be provided to people affected by dementia our staff are trained by Auckland’s Registered Provider, Lynn Hart, who is a qualified trainer and who herself has been trained by Dr Gemma Jones. Dr Gemma Jones is a highly respected consultant and leading authority who specialises in the education of caregiving and design of dementia care facilities, and the co-founder of the Alzheimers Café. The training course taught is called Communication and Care Giving in Dementia – A Positive Vision.’ This course introduces us to the behavioural staging model, which helps us to care, understand and support people appropriately due to the stage they are currently living in with their dementia, how this affects them and the most appropriate care interventions for each individual.
Our belief is that people living with dementia need to feel safe and comfortable if they are to get the most out of their lives and this is central to the way we care for and support our residents. We work closely with residents’ families, friends and the various professionals that may also be involved in supporting the resident, as well as of course, the resident themselves, to gather as much information about the person as possible regarding likes and dislikes, life history, experiences and influences as we believe that knowing as much as possible about a person will better help us understand their behaviour and build meaningful relationships with them.
This will help us to ensure that, for our residents and staff, ‘every moment matters
We listen to our clients
Every year, Aucklands surveys its clients, their families, and their network of social workers, district nurses, care managers, and GPs, to give us feedback on how effective and satisfying they believe our services to be.
Our annual surveys shape the services that we provide, and we are grateful to our clients and their families for their continued participation in them.
We’re independently assessed by the CQC
Our latest Care Quality Commission (CQC) Inspection report can be viewed at; The CQC Website. Our rating is ‘Good’.
Our staff are valued and developed
We hand-pick all of our care team members, and Aucklands’s highest levels of management are involved in vetting applicants. We nurture their skills and value the importance of their personalities in delivering our high quality home care.
What you see is what you get
“There’s nothing glossy about delivering true quality care,” Nicky says, “and it’s disingenuous to pretend that there is. No one wants to have to rely on somebody else to live comfortably in their own home. No one wants to require help to meet their daily goals.
“But if we can understand this as carers – we can bring a genuine desire to improve a person’s quality of life into our work and a will to make the care right for them – Quality is not an act, it’s a daily habit, and we’re proud of the care we provide.”
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/
Behavioural Staging.
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
Stage Two – Time Confusion, moderate confusion
Stage Three – Repetitive motion, severe confusion
Stage Four – Vegetation
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.
Validation
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?’
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.’
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 One
Mal-orientation
KEY HELPING BEHAVIOURS
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 Two
Time Confusion
KEY HELPING BEHAVIOURS
Stage Three
Repetitive Motion (and speech)
KEY HELPING BEHAVIOURS
Stage Four
End stage withdrawal (like a kind of in and out of hibernation)
KEY HELPING BEHAVIOURS
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
- humorous
- helpful
- 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)
Stage 4 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.
