Useful Resources

This page brings together trusted organisations and resources to support families affected by Lewy Body Dementia, based on what helped us during our journey.

 

We only share resources that we believe are compassionate, reliable and genuinely helpful for people navigating this journey.

When Grandma was first diagnosed, I had no idea where to start - every website said something different, every person had their own version of events, and Google felt like a maze of medical jargon.

 

So, I’ve gathered together the resources that actually helped me from care advice and dementia support groups to legal and financial help.

 

These are places, books and organisations that offer real-world guidance, emotional support, and practical information for anyone facing Lewy Body Dementia  whether you’re a carer, a family member, or just trying to understand.

Understanding Lewy Body Dementia 

 

Links to reliable medical information and awareness sites.

    Lewy Body Society (UK) - UK-based charity

    Lewy Body Society (UK): https://www.lewybody.org

    UK-based charity raising awareness, funding research, and offering family support.

      Alzheimer’s Society – Lewy Body Dementia:

      Alzheimer’s Society – Lewy Body Dementia: https://www.alzheimers.org.uk/about-dementia/types-dementia/dementia-lewy-bodies

      Clear explanations of symptoms, diagnosis, and treatments.

      NHS – Dementia with Lewy Bodies

      NHS – Dementia with Lewy Bodies: https://www.nhs.uk/conditions/dementia-with-lewy-bodies/

      Medical overview and guidance for UK families.

      Support for Carers & Families

       

      Where to find emotional and practical help.

         

        Age UK - Resources for older adults and their families

        Age UK: https://www.ageuk.org.uk 
        Resources for older adults and their families, from health to housing. 

        Mind – Emotional wellbeing support for carers

        Mind – Caring for Someone with Dementia: https://www.mind.org.uk 


        Emotional wellbeing support for carers.

        Carers UK - Advice on carers’ rights, benefits, and community support.

        Carers UK: https://www.carersuk.org 


        Advice on carers’ rights, benefits, and community support.

        Legal, Financial & Practical Help

        Power of Attorney - Step-by-step guide to setting up a Lasting Power of Attorney (LPA).

        GOV.UK – Power of Attorney: https://www.gov.uk/power-of-attorney 


        Step-by-step guide to setting up a Lasting Power of Attorney (LPA).

          Advice on care funding, benefits, and housing

          Citizens Advice: https://www.citizensadvice.org.uk 

          Free advice on care funding, benefits, and housing.

            NHS Continuing Healthcare - Info on eligibility and how to apply

            NHS Continuing Healthcare: https://www.nhs.uk/conditions/nhs-continuing-healthcare/


            Information on eligibility and how to apply.

              If your loved one is already in a care home or about to move into one do speak to the care homes and or your loved ones social worker about funding as some of them will assist with applications for further funding requirements such as nursing care: NHS-funded Nursing Care (FNC) Works and NHS Continuing Healthcare (CHC) Works

               

              Finding & Understanding Care Homes 

              When we were searching for a care home for Grandma, it honestly felt like a minefield. Every home sounded wonderful on paper but brochures and websites don’t always show the full picture.


              That’s where Carehome.co.uk  became invaluable. I wish I could take credit for this find but this one came recommended via a friend who works in the industry as a resource to use.  Carehome.co.uk is the UK’s largest care home directory, packed with verified reviews written by residents, family members, and sometimes even professionals. Each review is checked to confirm the person actually has a genuine connection to the home so you’re not just reading marketing fluff.

              You can search by:

              • Location (postcode or area)
              • Type of care (like dementia, nursing, or respite)
              • CQC rating and review score

              The best part? You can compare homes side-by-side and read honest feedback, both good and bad, to see trends. If three people mention poor communication, or ten mention brilliant staff, you’ll know it’s more than a one-off comment.

               

              Other resources / sites: 

              • Care Quality Commission (CQC): https://www.cqc.org.uk 
                Search and compare care homes across England by rating and inspection reports.

              My only concern with CQC is sometimes they haven't visited care homes for over 5 years so how do they know they are still good or outstanding? Other things to consider is if a home just got a really bad CQC rating new management and staff are parachuted in to the home to turn it around along with further financial help so some of the newly listed "bad" rated homes are often turned around to be positive or good ones quite quickly but will still be listed as a bad rating. 

               

                 

                Care Quality Commission (CQC)

                Care Quality Commission (CQC): https://www.cqc.org.uk 

                Search and compare care homes across England by rating and inspection reports.

                 

                My only concern with CQC is sometimes they haven't visited care homes for over 5 years so how do they know they are still good or outstanding? Other things to consider is if a home just got a really bad CQC rating new management and staff are parachuted in to the home to turn it around along with further financial help so some of the newly listed "bad" rated homes are often turned around to be positive or good ones quite quickly but will still be listed as a bad rating. 

                  Specialist Dementia Nurses

                  Dementia UK Admiral Nurses: https://www.dementiauk.org/get-support/ 


                  Specialist dementia nurses offering one-to-one support for families.

                  Community & Real Stories

                  Because no one should feel alone in this.

                   

                  • The Lewy Body Dementia Association (this is a US company but globally useful): https://www.lbda.org 
                    Community support, educational webinars, and first-hand accounts.

                  RECOMMENDED READING: Contented Dementia – by Oliver James

                  Sometimes the most valuable insight doesn’t come from a leaflet or a doctor, but from someone who’s lived it or dedicated their life to understanding it. This books offer comfort, perspective, and practical tools for navigating dementia care with compassion and patience.

                   

                  This book offers a way to create a calm, reassuring environment for someone living with dementia by focusing on emotional memory instead of trying to correct confusion.

                   

                  It changed how I viewed communication and patience with Grandma, shifting from trying to fix the confusion to working with her reality instead of against it.

                   

                   

                  These are the places I turned to when I didn’t know what to do next.

                   

                  If you know of a resource that could help other families, please get in touch via our contact page.

                   

                  None of us should have to face this journey alone.