Dementias 2006 23 rd & 24 th February 2006 Savoy Place London

1. Dementias 2006 23rd & 24th February 2006 Savoy Place London

2. Specialist palliative care in dementia Dr Julian C Hughes Ash Court, North Tyneside General Hospital & Institute for Ageing and Health, University of Newcastle

3. The Political Pressure(Hughes, Robinson and Volicer, 2005) • “Every person with a progressive illness has a right to palliative care”(WHO, 2004) • “Lack of palliative care for non-cancer sufferers … greatest inequity of all in palliative services” (Health Committee of House of Commons, 2004)

4. Specialist palliative care in dementia: • What does it mean? • What might it involve? • How could we do it?

5. What does it mean? (1) • Palliative care – “The active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount.” (WHO, 1990)

6. What does it mean? (2) • Affirms life – death normal process • Relief from symptoms • Integrates psychological, social and spiritual • Offers active support to dying people • Offers support to families

7. What does it mean? (3) • Underlying principles (Addington-Hall, 1998): • Focus on quality of life • Whole person approach • Care for all concerned • Respect for autonomy • Open and sensitive communication to patients, informal carers and colleagues

8. Psychological needs (Kitwood, 1997) Attachment Comfort Identity Occupation Inclusion WHO Definition (1990) Support Symptom control Integration Affirmation Holism Palliative Care versus Person-Centred Care(see Hughes, Hedley and Harris in Hughes (2005))

9. Palliative care approach Palliative interventions Specialist palliative care Dementia care ? Terminal care So what might it involve? (1)

10. Palliative care approach Palliative interventions Specialist palliative care Dementia care Behavioural and psychological signs of dementia Terminal care So what might it involve? (2)

11. What might it involve? (3) • Pharmacological approaches • Symptoms of dying • BPSD • Antipsychotics, • Anticonvulsants, • Antidepressants, • Anti-dementia drugs

12. What might it involve? (4) • Psychosocial approaches • Standard: • Reality orientation, Validation, Reminiscence • Non-standard (‘alternative’): • Art therapy • Music therapy • Activity therapy • Other complementary therapies (herbs, massage, reflexology • Aromatherapy • Bright light therapy • Multisensory (Snoezelen) • Doll therapy • Specific: • Behaviour therapy, CBT, IPT

13. What might it involve? (5) • Clinical problems: • Management of fever • Swallowing problems • Artificial nutrition and hydration (ANH) • Treatment of other medical problems

14. What might it involve? (5) • Ethical issues • ANH! • Withholding and Withdrawing Treatment • Ordinary and Extraordinary Means • Futility (DNR) • Doctrine of double effect • Euthanasia

15. How could we do it? (1) Do we need to? • McCarthy et al (1997) • 40% of people die in the community • <2% of people in hospices have dementia • Suboptimal treatment of symptoms • Carers need considerable support pre-bereavement

16. How could we do it? (2) Do we need to? • Mitchell et al, 2004 : • Greater use of non-palliative interventions • Inadequate treatment of some symptoms • Lack of advance care planning

17. What’s the evidence?(Sampson, Ritchie, Lai, et al. 2005) • 30 Review articles • Only 4 eligible for full appraisal • Only 2 met full criteria • Equivocal evidence of the efficacy of a palliative model of care in dementia • Increased interest, but little evidence: ethical difficulties, prognostic uncertainty, lack of clear outcome measures

18. How could we do it? (3) • Hospice (American style) • Care pathways: • Liverpool Care Pathway (Ellershaw et al, 1997) • Gold Standards Framework (Thomas K, 2003) • Outreach team (based where?) • ‘Macmillan’ (Admiral) CPN

19. The need for more research North Tyneside General Hospital TRF: The assessment of good practice in pain management in severe dementia: a pilot study (Dr Alice Jordan) Zwakhalen, Hamers, Abu-Saad and Berger (2006) Pain in elderly people with severe dementia: a systematic review of behavioural pain assessment tools. BMC Geriatrics, 6:3 doi:10.1186/1471-2318-6-3

20. The Vision • ‘A new form of hospice for patients with advanced [dementia] would revolve around the concept of ‘being with’ rather than ‘doing to’ patients beyond moderate [dementia], even if they have some years to live. Obviously, palliative medications and care for conditions such as skin sores would be imperative. Efforts to enhance emotional, relational, and esthetic well-being would, under such a plan, be enhanced in ways that involve family members, providing them with a sense of meaning and purpose. Through music, movement therapy, relaxation, and touch, such efforts support patients’ remaining capacities.’ (Post 2000, p. 107.)

21. In Conclusion(From Ethox project: Baldwin et al.) • …if you’d said to me ten years ago at the beginning of this illness, in ten years time my husband will become immobile, speechless, doubly incontinent, unable to do anything for himself ... And if somebody said to me, ‘Does somebody in that state have any quality of life?’ I think ten years ago I’d have said, ‘No’, …. He likes the feel of the sun on his hands, he likes to see what he probably distinguishes as bright colours, .... He likes his music, he likes to be sung to, he likes to be played with in a way that you play with a small child and he loves human contact and cuddles and tickles and all these sorts of things. And yes there is still a quality of life there.

22. Summary:Specialist palliative care in dementia • What does it mean? - focusing on a neglected area of care • What might it involve? - more intense attention to the broader aspects of psychosocial care • How could we do it? - Specialist link nurses