A family-led vision of what carers of people with dementia need and want to know. Supporting families and carers in their day-to-day life with dementia, this unique resource combines real stories from families with expert responses and advice for specific issues and concerns. This resource is based on the real stories and real questions brought to the Admiral Nurse Dementia Helpline, peer support groups and clinical networks. Including questions around diagnosis, peer support, balancing risks, care transitions and end of life planning, the chapters are devised to support you, and give you the tools to live better, when dementia enters your life.
Dr Karen Harrison Dening is Head of Research & Publications at Dementia UK, home of Admiral Nursing. She has years of expertise in palliative and end-of-life care, advance care planning and case management in dementia. Her previous books with Jessica Kingsley Publishers are Evidence-Based Practice in Dementia for Nurses and Nursing Students, and Dementia, Culture and Ethnicity: Issues for All. Dr Hilda Hayo became Chief Admiral Nurse & CEO for Dementia UK in 2013. A dual registered nurse, over the last 36 years she has held senior positions in clinical services, hospital management and higher education. Christine Reddall has worked in many different settings. As a community Macmillan Nurse, realising that people with dementia and those with learning disabilities rarely accessed good palliative and end-of-life care, she concentrated her efforts in enabling this. Christine has used her experience gained from both professional and personal perspective to help promote awareness of young dementias.
Foreword. Preface. Admiral Nursing. Chapter 1 - Consultation is key. Chapter 2 - 'Discovering my mother through Alzheimer's' - Life Story. Chapter 3 - 'I kept telling myself that he was still grieving for Mum' - Diagnosing dementia in later life. Chapter 4 - 'Getting a diagnosis is not easy'- Diagnosis of dementia under the age of 65. Chapter 5 - 'Maintaining independence and autonomy' - Balancing the risks. Chapter 6 - 'Planning ahead is so overwhelming' - Advance care planning. Chapter 7 - 'Once he got a diagnosis the girls had to believe' - Distance and denial of dementia. Chapter 8 - 'I feel as though I am going mad' - Overwhelming grief. Chapter 9 - 'How does physical ill health affect people with dementia?' - Understanding delirium. Chapter 10 - 'I thought dementia was just about memory loss?' - Hallucinations. Chapter 11 - 'He's run away with another woman' - False beliefs and delusions. Chapter 12 - 'He'd sit in that blessed chair all day, he would' - Apathy in Dementia. Chapter 13 - 'Where is your father?' - Bereavement and dementia. Chapter 14 - 'Time to go home now' - A story of sundowning. Chapter 15 - 'Why is it so difficult to get NHS continuing healthcare funding?' Chapter 16 - 'I just felt as though I had failed her when she needed me most' - Transition into a care home. Chapter 17 - 'Dementia patients don't feel pain' - Palliative care and dementia.
A guidebook for families and carers of people living with dementia giving help and support for their essential needs
