2. Advance Care Planning Unit 8: Advance care planning and the challenge of dementia

3. Learning outcomes By the end of this unit you will be able to: define dementia have a greater understanding of how people live well with dementia understand how dementia affects families and carers understand the importance of early advance care planning for people with dementia. Unit 8: Advance care planning and the challenge of dementia

4. A syndrome which may be caused by a number of illnesses in which there is progressive decline in multiple areas of functioning including; decline in memory, reasoning, communication skills and ability to carry out daily activities. Department of Health (2009) A definition of dementia Unit 8: Advance care planning and the challenge of dementia

5. Main types of dementia Alzheimer’s disease. Vascular dementia. Unit 8: Advance care planning and the challenge of dementia

6. Types of dementia

7. Unit 8: Advance care planning and the challenge of dementia Know where to go for help. Know what services they can expect. Seek help early for problems with memory. Receive high-quality care and equal quality of care wherever they live. Are involved in decisions about their care.

8. Unit 8: Advance care planning and the challenge of dementia 1.High-quality compassionate care. 2.Provision of advice and support. 3.Carer support. 4.Support for the health care professional. 5.Right treatment at the right time in the right place.

9. Dying with dementia People living with dementia die with dementia even if this is not the primary cause of their death. Not all people living with dementia will reach the end stage of the disease before they die. This may impact their advance care plan. It is important to start making plans early for people with dementia. Unit 8: Advance care planning and the challenge of dementia

10. End of life care for people living with dementia End of life needs to be considered as a broad approach over many years that addresses the needs of the person with dementia, their families, and the health and social care staff who work with them. Unit 8: Advance care planning and the challenge of dementia

11. Carer support A diagnosis of dementia not only has a significant effect on the person but it also has a great effect on the family and friends supporting them.

12. Things to consider when advance care planning with people who have dementia The right time. The right place: quiet, unthreatening, with no distractions. Involvement of family. Can be a continuing discussion – but consider early planning for people with dementia. Consider lasting power of attorney. Make sure the person’s wishes and ideas are noted somewhere. Unit 8: Advance care planning and the challenge of dementia

13. Reviewing advance care plans – questions to consider Have the person’s wishes changed? Have other conditions been diagnosed? Do the plans remain appropriate? Is the person still living in the same environment? What other changes have occurred that may impact on the ACP? Do they still have capacity to make their own decisions? If not, does a best interests decision need to be made on their behalf? Unit 8: Advance care planning and the challenge of dementia

14. Case study – Mrs Smith Mrs Smith was diagnosed with vascular dementia three years ago. With the help of her husband, she is managing well at home. However, at times Mr Smith is upset by his wife’s changing behaviours towards him and he feels her memory is not as good as it was. Mrs Smith is anxious as she recently had a fall and broke her hip. She decided in hospital she would not want to go back in for any treatment. She wants to write down her wishes now. Unit 8: Advance care planning and the challenge of dementia

15. Reflection – Mrs Smith Consider how an advance care plan should be made for Mrs Smith. Are you the right person to help? How would you assess she has capacity? How would you initiate this discussion? What do you think are the barriers for Mr and Mrs Smith becoming involved in this discussion? What can you do to facilitate this discussion? How could you encourage Mrs Smith and her husband to consider all the options? Unit 8: Advance care planning and the challenge of dementia

16. Learning and reflection You should now have an understanding of: what dementia is how dementia affects the way you approach advance care planning the effects of advance care planning on the family and carers of people with dementia the benefits and importance of early advance care planning for people with dementia. Unit 8: Advance care planning and the challenge of dementia

17. Resources End of life care for people with dementia living in care homes http://www.scie.org.uk/publications/briefings/files/briefing40.pdf http://www.scie.org.uk/publications/briefings/files/briefing40.pdf Prime Minister’s Challenge on Dementia (2012) https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/21 5101/dh_133176.pdf https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/21 5101/dh_133176.pdf Rising to the Prime Minister’s Challenge on Dementia: A spot light on end of life care http://www.ncpc.org.uk/sites/default/files/DementiaChallenge_Pages%20in%20 Order.pdf http://www.ncpc.org.uk/sites/default/files/DementiaChallenge_Pages%20in%20 Order.pdf Dementia: A state of the nation report on dementia care and support in England (2013) https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/26 2139/Dementia.pdf https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/26 2139/Dementia.pdf Carers UK http://www.carersuk.org/http://www.carersuk.org/ Dementia: Supporting people with dementia and their carers (2006) http://www.nice.org.uk/nicemedia/pdf/CG42PublicInfo.pdf http://www.nice.org.uk/nicemedia/pdf/CG42PublicInfo.pdf

18. This training package was created in partnership by: