Dementia in Palliative Care May 2016 Sue Johnson, Karen Rose, Lynsey Bates St Luke’s Community Nurses
Prevalence • There are 850,000 people living with dementia in the UK . • By 2025 the number is expected to rise to over one million. • In the UK it is estimated that 62% of people with dementia are female and 38% are male. • In the UK over 40,000 people under 65 years of age have dementia. (Alzheimer’s Research UK , March 2016) CQCreccomendations t
St Luke’s Referrals • From April 2015 -.January 2016 there were 1,299 patients referred to St Luke’s Community Team. • 82 of these referrals had dementia within their diagnosis, which equates to 6.4% . • . • . /JanuaryCQCreccomendations t
A daughter’s perspective THE WAITING ROOM on Vimeo
‘Cracks in the Pathway’ Care Quality Commission(CQC) Report, October, 2014 The CQC carried out a thematic review of people living with dementia as they moved between care homes and acute hospitals. They found that the quality of care for people living with dementia varied greatly and that it was likely that they would experience poor care at some point. • t •
Recommendations of CQC • People with dementia, their families have the right to be treated with respect, dignity and compassion. • Ensure that care is safe, effective, compassionate and high quality. • Personalized approach is key to high quality care. • Care should be delivered by knowledgeable and skilled staff who have time for the individual needs of the person with dementia.
Other CQC recommendations • Comprehensive assessments should be carried, updated and then shared when someone moves between services. There should be an open and transparent culture, focused on the needs of the individual. • Willing to look at innovative, creative solutions. • Seeking out good practice to adopt and constantly keeping its own service under review. CQCreccomendations t
Dementia • Dementia is not a disease in itself. Dementia is a word used to describe a group of symptoms that occur when brain cells stop working properly. CQCreccomendations t
Types of dementia • Alzheimer's – Memory loss with slow insidious onset, language impairment, failure to recognize relations and corers. Most common cause of dementia. • Vascular – Often stepwise progression, memory loss, recent stroke,TIA,Myocardial Infarction, Focal neurological signs. Second most common cause of dementia. • Lewy Body - Fluctuating memory impairment, prominent visual hallucinations, repeated falls. Third most common cause of dementia
…Types of dementia • Frontotemporal dementia . A relatively rare form of dementia accounting for less than 5% of all dementia cases . It usually affects people between the ages of 45- 64. The frontal lobes regulate our personality, emotions and behaviour, as well as reasoning, planning and decision making.
How is diagnosis made • Referral to Memory Clinic • Physical examination • Memory tests • Brain scan • Blood tests
Pharmacological treatment (no cure) • Donepezil • Aricept • Rivastigmine • Galantamine • All these medications try to slow down the progression of the illness.
Early signs of dementia • Loss or lapse of recent memory • Mood changes or uncharacteristic behaviour • Poor concentration • Problems communicating • Getting lost in familiar places • Making mistakes in previously learned skill • Changes in sleep pattern or appetite • Personality changes • Visio-spacial perception issues
Problems with communication • Ability to understand and use language accurately/ appropriately may be affected. • Difficulty remembering words or using them accurately • Repetition of thoughts and lack of coherence • Ability to communicate may vary from ‘day to day’ • Other conditions may affect their ability to communicate
How the professional should communicate • Maintain eye contact • Speak clearly in short sentences • Simple vocabulary / avoiding jargon • Be patient and allow time to answer • Try not to finish a sentence unless asked to do so • Avoid negative statements – ‘Don’t’ • Repetitive questions can be challenging-try to respond as if it is the first time. • Whatever is said it is usually best to accept and not argue. t
… Communication • May need to frame questions as yes or no • Listen carefully to grasp meaning or tone • Use non verbal communications i.e. gestures, facial expression or written communication • Use images, pictures, symbols or music to enhance understanding • Refer to communication guidelines in care plan
Promote independence / activity • Encourage to maintain activities they enjoy • Respect individuals needs and preferences • Deliver person centered care with patience, dignity and respect. • Support people to make their own choices e.g meals they enjoy. • Do things with the person rather than for them
... Promote independence/activity • Support to self care for as long as possible. • Use signage to support if helpful to individual. • Support to access mainstream services such as shops, going to bank if appropriate. • Ensure there is adequate means of hydration and nutrition. • Presume a person has capacity to make decisions by themselves unless proved otherwise. t
‘This is Me’ document • A tool intended to provide professionals with information about the person. • It enables those involved to see the person as an individual, and so deliver more person centred care • It tells Health Professionals their needs ,preferences likes, dislikes and interests. • .
‘This is Me’ document • This will enhance the care and support given, while the person with dementia is in an unfamiliar environment. • It can help to reduce distress for the person with dementia and their carer.
Recognising distress • Diffuse a person’s anxiety and support their understanding of events they experience • Unfamiliar surroundings can lead to uncharacteristic behaviour that is difficult to manage • Access to structured activity/personal interaction supports people to participate socially and reduce frustration • REMEMBER that distress may be a sign of an unmet need.
NICE Guidelines • NOTE : NICE 2006/08 guidelines state that antipsychotic medication to reduce challenging behaviour should only be given in exceptional circumstances and should be regularly reviewed . • The suggestion is that for most people they are counter productive
Managing distress….. • Support in a person centered way to help identify triggers: consider if unmet need is cause • REMEMBER – all behavior is a reaction to a feeling- try and understand why someone may feel the way they do.
Possible causes of distress • Misunderstanding of their environment • Feeling frustrated unable to be understood • Fear • Loss of inhibitions , Decreased awareness of appropriate behaviour. • Responding to what they feel to be over controlling care • Past history/experiences • Pain • Professional’s responses to their actions
Other causes of confusion • Infection • Urinary retention • constipation • Hypercalcaemia • Nicotine withdrawal • Deafness • Underlying mental health problems • Low sodium • Brain metastases • CVA
Pain assessment tools • DisDAT – disability distress and assessment tool • PAINAID scale tool • Abbey Pain Scale • Doloplus
Family and carer issues • Upset, frustration / embarrassment can be as distressing for loved ones • Family friends and carers need to maintain their own health and well being • They often need support to develop coping strategies. • Planning for the future .Involvement in advanced care planning/power of attorney .
….Family and carer • Dementia is often distressing for their relatives/friends • Encourage them to be involved in shared activities with the person with dementia. • Encourage carers to maintain social contacts for themselves as well as the person with dementia. • Intervention should occur before they reach breaking point. t
Avenues of support for carers • Memory Clinic • Dementia Cafes/dementia Day Care/respite • Sheffield Carers Centre – courses for carers • Alzheimer’s Society in Sheffield • Age UK Sheffield • . T
…..Avenues of support for carers • Carers entitled to a ‘Carers Assessment’ to look at carers needs/impact on carers life • ’Making Space Hubs’ (a new initiative) - activities for people with dementia- enabling some respite for carers • Sheffield Dementia information Pack • National Dementia Helpline – 0300 222 1122
Advance care planning • Lasting Power of Attorney • Mental Capacity Act – appointing IMCA if no NOK advocate (Best Interest Meeting) • Advance Decision to Refuse Treatment • Preferred Priorities of Care Document
Importance of MDT approach • Aim for seamless approach between different teams /agencies • All practitioners should liaise/work together in order to support personalised care. • Ensure continuity of the carers involved . • Co-ordinated support
Poem – ‘Why I Wonder’
Recommend
More recommend
