A challenge to us all So you have an incurable disease a terminal disease a disease that many people associate still with ‘madness’ How do you feel?

“If you’re demented, you’re wasting lives - your family’s life – and you’re wasting the resources of the National Health Service…the real person has gone already…and nobody wants to be remembered in that condition.” (Warnock,2009)

Societal stigma and consequent lack of understanding can get to us all Most of our systems give us no time to tackle this

Good and effective care for people must understand the whole person, his/her history, relationships, beliefs, physical and mental state - without that person necessarily giving this verbally in a coherent fashion.

No person with dementia is a passive victim of the disease, as a biomedical model would imply, but an active person seeking to cope with and manage the disease.

‘Challenging’ behaviour is an attempt to communicate a need. We must find out what the need is and meet it.

Challenges for us: Recognising and managing pain Understanding different realities Understanding the perceptual, visual and processing changes that come with dementia

They will be different for every person and for each one of us, so it will take a lot of time and thought.

“Pain is whatever the experiencing person says it is, existing whenever he says it does.” (McAffrey 1968) If the only clear indications of pain are agitation and distress, a solution involves everyone.

Different realities: I want to go home. Where’s mother? Who is this woman? We have to learn to speak the language and see with their eyes

Different realities: interpreting an attempt at treatment as past abuse fear making all attempts at help appear as threats to self

Refusal of medication a different person a different time is this unusual so may be temporary? wanting some attention

Is there a sudden loss of capacity? If not, we all have a right to refuse medication even if it’s unwise. Is there an Advance Directive? Talk with relatives and friends May need a ‘Best Interest’ meeting with those who know the person or with an advocate

Frightening things Perception changes and sight loss: narrowing of visual boundaries with age changes in processing visual information unexplored links between cognitive function and poor vision

If people are scared because they cannot see or perceive things differently, they may: hit out or kick refuse to move refuse to go to a particular place refuse to bathe be very incommunicative

It all takes time and there’s no easy answer.

Family and friends will be in an emotional state – that does not mean that they won’t help shed light on things. It does mean we may have to do some work with them as well; also useful in relationship terms.

Research into working with such challenges shows that all staff involved benefit from closer working and open discussion. Peer discussion and support is often the best way to resolve a challenging problem.

: “ We want not to be smothered by your care, nor isolated by your denial, nor cast aside as a victim of your grief but we want you to be a care partner walking alongside us to meet our increasing needs.” Christine Bryden Dancing with Dementia

Alzheimer’s Society North Parade BRADFORD BD1 3HT T: