Dementia at the End of Their Lives Nicki Bones Matt Mills CEO - - PowerPoint PPT Presentation

KCL Home Care Forum 11th September 2019 Nicki Bones CEO

Understanding & Caring for People with Dementia at the End of Their Lives

Matt Mills Service Director

Agenda

• 1. The Importance of Comfort Care in Dementia
• 2. Assessment & Establishing Goals
• 3. The SweetTree Way
• 4. Ongoing Assessment & Review
• 5. Family/Formal Carer Support & Signposting

A little bit about us . . . . .

SweetTree Home Care Service began life in 2002 in Swiss Cottage supporting general home care

• needs. 17 years on we now have six specialists services, all individually led by highly experienced

clinical managers providing 2 to 24 hour care at home.

• General Home Care
• Dementia Care
• End of Life Care
• Learning Disability Support and complex care
• Acquired Brain Injury
• Neurological Conditions

Supporting people to reach their full potential

The Importance of Comfort Care in Dementia

• A study conducted by Kings College, Department of Palliative Care Policy &

Rehabilitation found that England has one of the highest rates of hospital death in dementia in Europe.

• Dementia is one of the main causes of disability later in life, ahead of cancer,

cardiovascular disease and stroke and 30% of people aged 65 or over will die with dementia (Dixon et al, 2015).

• 2 in 5 people with dementia die in hospital. However, the trend towards

increasing hospital deaths has reversed, care homes as place of death has

• risen. Home and hospice deaths are rare.

The Im Importance of f Comfort Care in in Dementia

• Dementia is not always recognised as a life limiting condition despite the bio-

psychosocial impacts of dementia.

• Initiatives which aim to support the end of life preferences for people with

dementia should be investigated with a focus on palliation through the disease progression.

• EOL Palliative Care is about supporting someone to live as well as possible.

Assessment & Goals

• “Outstanding” End of Life Care should be person-centred taking into account the

wishes, goals, and needs of the person and their loved ones.

• Assessments should be holistic and strengths focused including physical needs,

psychological needs, emotional needs, social needs, and spiritual beliefs/needs.

• Goal is to promote: Choice, Compassion, Respect, Dignity, Comfort, Cleanliness,

Freedom from Pain/Distress, and being in a familiar place surrounded by important people. Allow the person to define how they want to live their life and what a good death is for them.

The Person & Their Family

Initial Enquiry Taken Knowledge and Information Client & Family Priorities Identified ACP Review to ensure CHOICE

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The SweetTree Way: Understanding & Caring for the Person

Input from external and internal experts Input from external and internal experts

Holistic Assessment with a Care Manager How to maintain comfort, dignity, choice MDT Contacts Established to Ensure Joint Working Ongoing Review and Adjust if needed

Consistency in the care team, manager, and coordinator as KEY to success.

Clinical Expertise and Specialist Knowledge

• It is important to critically consider the work of other

professionals and difficult questions. At the end of the day, what happens on our watch is our responsibility – its about ownership!

• Our 'In – House' teams has RGN’S, RMN’S, Social Workers, Clinical

Psychologist, Physiotherapists , Qualified trainers.

• Each service is managed by specialist managers who recruit

specialist teams to each service

• Specialist Training for teams with accredited training with the

SweetTree Academy

Ongoing Clinical Assessments

• Reviews: What’s working, what’s not working?
• Care Manager as point of central contact for any concerns/changes
• Flexible approaches to care – 2- 24 hr care with senior management back up
• Any adjustments needed to structure of visits addressed on an ongoing basis
• Bespoke training of staff

Evidence Based Tools in Promoting Comfort

• Look to prevention first, then contingency/intervention planning.
• Examples: PainAD, Abbey Pain Scale, Global Deterioration Scale, Distress Thermometer, ABC

approach.

• Recognizing Delirium – infection management, monitoring bowels/bladder, hydration,

medication, environmental factors.

• When does someone want to go to hospital and for what?

Contingency planning for all ……..

✓ Advise older people and their families to have LPA in place for health & wellbeing and finance ✓ Support advanced care planning and those difficult conversations ✓ Keep assessments and contacts up to date ✓ Advise patients on DNAR’s ✓ Have contingency plans in place for the – ‘what if ? ‘

Many patients and their families are unprepared for ill health and frailty as a person ages. Sudden illness can lead to multiple vulnerabilities and even loss of capacity … planning can be the key

Establishing Partnerships in Care

Family and Formal Carer Support & Signposting

• How SweetTree supports families
• How we support our carers
• Whole systems approach – takes everyone working together to

provide good care.

Additional Resources

• Alzheimer’s Society – www.alzhiemers.org.uk
• Marie Curie – www.mariecurie.org.uk
• NHS Choices: www.nhs.uk/conditions/dementia/palliative-care/
• SCIE - www.scie.org.uk
• Dementia UK/Admiral Nurses – www.dementiauk.org

References

• Sleeman KE, Ho YK, Verne J, Gao W, Higginson IJ. Reversal of English trend towards hospital death in dementia: a

population-based study of place of death and associated individual and regional factors, 2001-2010. Department of Palliative Care Policy & Rehabilitation, King's College London, Cicely Saunders Institute.

• Palliative Care for People with Dementia: Why Comfort Matters in Long-Term Care, CaringKind: www.caringkindnyc.org
• End of Life Care: Factsheet 531LP, January 2017, Alzheimer’s Society: www.alzheimers.org.uk
• Dixon J, King D, Matosevic T, Clark M and Knapp M, Equity in Palliative Care in the UK, PSSRU, London: London School of

Economics/Marie Curie (2015)

• North West Coast Strategic Clinical Network, Palliative Care Guidelines in Dementia 2nd Edition Version 3.9 – March 2018