What You Really Want to Know About Life with Dementia: Real stories and expert advice for family, friends and people with dementia

Karen Harrison Dening, Hilda Hayo, Christine Reddall, Keith Oliver

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.

Cyfrol sy’n canolbwyntio ar y teulu am yr hyn y mae ar ofalwyr pobl â dementia angen ac eisiau ei wybod. Yn cefnogi teuluoedd a gofalwyr yn eu bywydau bob dydd gyda dementia, mae’r adnodd unigryw hwn yn cyfuno straeon go iawn gan deuluoedd gydag ymatebion arbenigol a chyngor ar gyfer materion a phryderon penodol.

Mae’r adnodd hwn yn seiliedig ar y straeon go iawn a’r cwestiynau go iawn a gyflwynwyd i Linell Gymorth Dementia Nyrsys Admiral, grwpiau cymorth cymheiriaid a rhwydweithiau clinigol. Gan gynnwys cwestiynau ynghylch diagnosis, cymorth gan gymheiriaid, cydbwyso risgiau, trosglwyddiadau gofal a chynllunio diwedd oes, lluniwyd y penodau i’ch cefnogi chi, a’ch arfogi i allu byw’n well, pan fydd dementia yn dod i mewn i’ch bywyd.

Dr Karen Harrison Dening
Head of Research and Publications at Dementia UK, Karen has over 45 years’ experience in dementia care, Karen completed her PhD at UCL on advance care planning in dementia. She has served as a committee member on both NICE dementia guidelines. Her research interests include dementia care, palliative and end-of-life care and advance care planning.

Dr Hilda Hayo
Hilda has been the Chief Admiral Nurse and Chief Executive Officer for Dementia UK since 2013. A dual registered nurse she has over 39 years’ experience developing and leading dementia specialist teams and services throughout the NHS.

During this time, Hilda has held senior positions in clinical services, hospital management and higher education. She held Principal Lecturer posts at both London South Bank University and University of Northampton, specialising in older people’s mental health, dementia and community care. She is a visiting fellow of dementia studies at the University of Northampton.

Hilda retains a small clinical caseload of families living with the effects of young onset dementia. Her doctorate focused on how and why social connectedness changes in families living with the effects of behavioural variant frontotemporal dementia.

Hilda has co-authored several books on dementia including the recently published ‘What You Really Want to Know about Life with Dementia,’ a guidebook for families and carers of people living with dementia giving help and support for their essential needs, published December 2022.