Dementia specialist contributes towards new guide for caregivers

Dr Carol Sargent is the only UK based dementia-inclusion expert who has shared her knowledge in a new book aimed at supporting carers globally.

Her expertise is showcased in the recently published The Caregiver’s Advocate: A Complete Guide to Support and Resources (published 28 June 2024). In the book a number of experts were invited to share stories and tips to inspire and support others.

Carol’s chapter, titled ‘Fill Your Life With New Experiences – How To Go On Vacation With Your Loved One’ features the story of Jim and Sylvia who first met her when they came on a holiday with an organisation which Carol founded more than a decade ago, MindForYou.

The organisation specialised in providing safe and enjoyable holidays for those living with dementia and their loved ones. Jim was anxious about going on that first holiday, absolutely certain that he and his wife would have to leave very quickly because of her anxiety.

Jim pointed out that Sylvia was very picky about her food and drink in particular and became distressed if her favourite food and drink was not provided – and provided in the right way. Carol was able to address those fears by listening and acting with Sylvia in mind.

Jim, who now lives in Wiltshire, said: “When we found Carol, the relief was such that I cried on the way back from our first holiday. After trying to go on holiday with no support, the difference was just amazing. The care and attention from all of the staff was incredible.”

Carol said: “When I’m speaking to someone who is considering a holiday, the first step is to understand what a holiday is for them and what a successful holiday would look like to them. Then we can begin to discuss those worries and concerns and put in place solutions to overcome these based on each person’s preferences and what they are or are not willing to do.”

By adopting that approach, Carol supported more than 1,500 people to enjoy holidays with a diagnosis of dementia, as well as other chronic health conditions. She still provides this today through her company Sargent Group Consulting.

After their first holiday, Jim and Sylvia returned year after year.

“We never let Sylvia’s illness stop us from doing things. We did as much as we could right up until she died. But to have the opportunity to go on holiday with truly compassionate, supportive people who truly understand and overcame the challenges was just wonderful,” Jim said.

“The most important thing people often don’t grasp about people with dementia is that they retain their individuality – no two are the same. This means they enjoy different things, want to do different things. Carol and her team understood all of this, and created an environment of real openness and freedom to give people the confidence to live their best lives.”

Carol was inspired to share Jim and Sylvia’s story to show that it’s possible for those with dementia to still enjoy going on holiday. She talks, in her chapter, about how support can come in several forms including information, equipment, technology and also people.

“Since my mum and mother-in-law were diagnosed with dementia I’ve dedicated my life to empowering family care-givers, those with dementia and people with other chronic illnesses to go on holiday and enjoy new experiences and meet new people. I am also working with professionals within the travel and tourism sectors to highlight the simple adaptations they can make to become more inclusive and welcome customers from the dementia community, as well as other people with disabilities.”

The new book, subtitled Heartfelt Insights & Wisdom – a caregiver’s support guide’, has been compiled by Debbie DeMoss Comptom and the book brings together more than 20 real stories of caregivers and their families including Carol’s story about Jim and Sylvia.

Out of these stories comes insightful tools, practical advice, planning information and legal knowledge across every aspect of caring for someone with dementia and other chronic conditions.

“I’m delighted to have contributed to this book,” Carol said. “It’s so important to give family caregivers advice on how they can approach their caregiving role in a way that supports them as well as the people they care for.

“Sharing how people can live their best lives with dementia– both at home and on holiday is key to combating the loneliness and depression that all too many have to endure. Sometimes it can be very small adjustments which can make a huge difference.”

Having his and Sylvia’s story in the book is, Jim said, “a wonderful tribute”. He went on to say that Carol’s writing is “real and true”.

He said: “I learned so much from Carol and will never forget her. I try and pass it on by doing as much as I can for others who are dealing with dementia.”

The book, The Caregiver’s Advocate: A Complete Guide to Support and Resources (pub. 28 June 2024) can be found here - https://bit.ly/3LDCPZD