Person-Centered Care and Dementia Cathie Jones Acting Matron Warrington Living Life Well Date: 20/04/16

Person-Centred Care What does it mean?

Personhood Personhood (Tom Kitwood, 1997) Basis of person-centred care (PCC) Security – feeling safe in living environment Continuity – Links between the past, present and future goals Belonging – Having a ‘place’ of my own, being accepted Purpose – direction in life Fulfilment – Something meaningful Significance – Feeling I matter, life has been/is important

Person-centred care is: Definition Person-centred care is: ‘A partnership aimed towards improving and maintaining the person’s quality of care by recognising and meeting the human needs of comfort, attachment, inclusion, identity, occupation and love’ (Kitwood, 1997)

Person-Centred Care WHO AM I ! LOOK AT MY LIFE STORY BEFORE YOU JUDGE ME

Person-Centred Components Being ‘Person-centred’ is about: Respect and dignity Being valued Seeing people as unique human beings Retaining sense of identity Enabling feelings of self-worth

Impairment of Personhood in Dementia Many losses are occurring-cognitive, emotional, social, physical. Loss is demonstrated in changes to the persons self-perception, awareness and responses. The loss of self-perception can lead to disorientation, apprehension, distress, anxiety, depression, elation, withdrawal from others. The person’s behavior's are often labeled as Behavioral & Psychological Symptoms of Dementia (BPSD) the person’s quality of life suffers if the BPSD label dominates staff thinking and negatively influences care and therapy delivery. (Chenoweth, 2011)

Views of people with dementia " I realize I sometimes do not make sense when I open my mouth and out comes a string of words, each of which is understandable, but when placed next to each other it is hard to figure out what the hell I'm talking about. My mind wanders, a lot. More and more I start talking about things I was thinking about, but we weren't necessarily talking about them at the time.”

PCC and Dementia Remember……….. Each person with dementia is a unique individual with their own individual experiences, their own needs and feelings, their own likes and dislikes Remember……….. person with DEMENTIA PERSON with dementia

Unfortunately….. There is a belief that the ‘self’ (personhood) is gradually lost in dementia, and behaviour is a response to brain death This leads to a ‘social death’ whereby people are treated as if they are not there, and their life history, feelings and needs do not matter (Chenoweth, 2011)

How would you feel and react if this was you? Imagine……. You are asleep in your chair at home when suddenly you are woken by a person you have never seen before trying to undress you You are feeling bored and restless at home so you decide to go for a walk. But you find your front door has been locked and a stranger appears and tells you to go and sit down. How would you feel and react if this was you?

How would you feel and react if this was you? Imagine……. You are feeling really angry about something, but nobody around you will take your grievance seriously and they keep telling everything is fine. You are sick and lying in bed, but no-one answers your requests to go to the toilet, and so you wet the bed How would you feel and react if this was you?

PCC Communication Whatever stage of the journey of dementia a person is at - we need to connect with them in their reality in an attempt to reach them. This is called the Bridge of Dementia and its our duty of care to try to reach them. Gladys Wilson

What can limit person-centred care in a care environment? PCC What can limit person-centred care in a care environment?

PCC: Challenges Widespread prejudice in society (against older people and against people with mental health problems) Task-orientated working practice Inadequate staffing levels Lack of training Poor supervision/support for staff Our imperfections!

People as individuals Each person with dementia will change and react to their difficulties in a different way It is very helpful to know about a person. This will help to think about what the person could be experiencing. SO………………. Finding out all about a person’s life is very important.

Person-Centred Care Therefore : Importance of life history/identity Validation of a persons experience and feelings Understand ‘challenging behaviour’ as expression of unmet need View all actions and verbalisation as potentially meaningful messages Meaningful and regular activity and occupation Holistic care that is empowering and includes personal choice

What not to Do! Unmet need = COMFORT: Unmet need = IDENTITY: Intimidation: frightening a person, by threats or physical power Withholding: refusing to give asked for attention, or to meet a need (e.g. for affectionate contact) Outpacing: providing information or presenting choices too fast for a person to understand or respond Unmet need = IDENTITY: Infantalization: treating a person patronisingly, as an insensitive parent might treat a very young child Labelling: using a pattern of behaviour or a category like dementia or ‘organic’ Disparagement: telling a person they are useless, incompetent or worthless; giving messages that are damaging to self-esteem

Unmet need = ATTACHMENT: Accusation: blaming people for what they have done, or failed to do, that arise from their lack of ability, or misunderstanding Treachery: using deception to distract or manipulate a person, or force them into compliance Invalidation: failing to acknowledge the subjective reality of a person’s experience, and especially what they are feeling Unmet need = OCCUPATION: Disempowerment: not letting a person use abilities they do have; failing to help them complete actions they have initiated Imposition: forcing a person to do something, denying possibility of choice on their part Disruption: disturbing a person’s action or inaction

Detractions Unmet need = INCLUSION: Stigmatisation: treating a person as if they were a diseased object, Ignoring: carrying on (in conversation or action) in the presence of a person as if they were not there Banishment: sending a person away, or excluding them; physically or psychologically Objectification: treating a person as an object to be pushed, lifted, filled or drained, without referring to them as human beings Mockery: making fun of a person’s actions or remarks; teasing, humiliating, making jokes at their expense

Person-Centred Care Promote positive health/minimum medication Identify opportunities to enhance well-being Collaborative care planning Recognise the contribution of families and significant others (engage in choices, activity, care decisions) Address staff needs/support issues Recognise power and equality in relationships

PCC Communication Physical and verbal communication Use clear speech and eye contact Avoid speaking with hand covering mouth, or with head turned Speak slowly Reduce length of sentences - do not overwhelm with too much information Reduce distractions (e.g. TV, radio) Include the confused person in conversations Verbalise what you are doing Use gestures to assist understanding

“This is Me” Maintaining PCC This leaflet will help you support me in an unfamiliar place (Alzheimer’s Society, 2013)

Maintaining PCC ‘Good dementia care is care which enables the sufferer to feel supported, valued and socially confident. The achievement of this is dependent upon the skills of the staff providing that care’ (Kitwood, 1997)

Am I getting it Right? Do my actions show that I respect, value and honour this person? Am I treating this person as a unique individual? Am I making a serious attempt to see my actions from the perspective of the person I am trying to help? How might my actions be interpreted by them? Do my actions help this person to feel socially confident and that they are not alone?

Any Questions ?