Useful links for advice, info and ideas
Carers organisation, discussion forums, news, everyday support
This list is based on recommendations
Please let me know if you have recommendations for your country.
I am not sponsored, paid or employed by any of these organisations.
UK Organisations
Helpful organisations that offer advice, listening services, and support.
Canada
Travel
UK Organisations
In the UK, the NHS defines an Unpaid Carer as
A carer is anyone, including children and adults who looks after a family member, partner or friend who needs help because of their illness, frailty, disability, a mental health problem or an addiction and cannot cope without their support. The care they give is unpaid.
Recommended for Carers:
Carers UK: For unpaid carers with expert information, advice and support. A Carers discussion forum (anonymous participation). Campaigning to make life better for carers
mobilise 'Together we care and thrive'
Flexa ‘Find your dream place to work. We find companies that you can trust, so you can find where you belong.’ Flexible work, remote work, and inclusive
Better Health (NHS) Every Mind Matters
“Looking after a child or young person's mental health
As parents and carers, there are ways we can support our children to give them the best chance to stay mentally healthy.”
Helping others with mental health problems
There are lots of things you can do to support someone you know who might be struggling with their mental health.
Cancer Support:
Macmillan Cancer Support. 'Because cancer can affect your life in so many ways, we do whatever it takes to give people the support they need.'
Dementia
This resource has been written by a friend I met at the Carers UK online forum:
Dementia Guidance: For people with dementia, Their friends and family.
What is Dementia Guidance?
Dementia Guidance provides a guide to free services available throughout the UK to people with dementia and their families.
My wife was diagnosed with dementia in early 2018 and since then I have come across benefits and services that are available without any cost being involved.
Even though you are faced with the life changing diagnosis of dementia, there is no method of automatically telling you about these services.
In our own case we have found them out merely by chance.
I have included one or two suggestions that involve some cost but I would strongly advise you consider them.By Derek contact@dementiaguidance.co.uk
Dementia UK Specialist Nurse support: What is an Admiral Nurse, and how can they help?
Alzheimer’s Society (UK)
Alzheimer’s Society Caregiver Guide Caring for someone with dementia Click here
Memory Cafés. Support groups
Cardiovascular Disease
Rheumatoid Arthritis
Respite Support
Carefree Carefree Transforms vacant accommodation into vital breaks for unpaid carers
Helpful organisations that offer advice, listening services, and support.
Carers Trust Young Carers Advice and Support
MIND Crisis and Listening services If you need to talk right now, there are many helplines staffed by trained people ready to listen. They won't judge you, and could help you make sense of what you're feeling.
UK Citizens Advice website
SCOPE We are Scope. We’re here to create an equal future with disabled people. We campaign to transform attitudes to disability, tackle injustice and inspire action. We create opportunities and provide information and support that empowers. One in four of us in the UK are disabled. We are a diverse, proud, and vibrant community. We are part of a powerful movement of disabled people, allies, organisations and businesses. And together, we will be unstoppable.
Carers UK and Access Ava. Free legal information for unpaid carers
As a carer, it might sometimes feel like you need to be an expert in the law just to make sure your family member or friend gets the support they have a right to.
Carers UK has teamed up with Access Social Care, a charity that specialises in legal advice for people with social care needs, to help you access easy-to-understand health and social care information at the click of a button.
AccessAva is an online tool that helps you understand the law governing social care in England. With AccessAva, you can find out about your rights and those of your family member, and complete template letters developed by expert lawyers.
UK Hospice Care Finder
Cruse. Grief can be overwhelming. You don't have to do it alone
USA
As recommended by Janice Walton in her article 'Resources for Family caregivers’
Kerri who writes The Other Parenthood suggests Calling a Senior Care Specialist
Amy Brown in her article ‘In caring for aging parents, can we see assisted living as assisted loving?’ writes about how she chose a memory care clinic for her Mom. She was offered free advice and guidance on senior care options from the organisation ‘a Place for Mom’. A local agency ‘Senior Living Selections’ provided ‘advice on the types of care available—in-home care agencies, elder day care centers, assisted living facilities, how to find other resources like elder care attorneys or social workers, and practical information on the cost of services and what Medicaid and Medicare did and didn’t cover.’
USA Caregiver Support Organisations
Dementia support organisations
Amy Brown shares her experience and other resources in her article ‘Caring for my mother with dementia is an act of love that nearly broke me’
Memory Cafés Support groups.
Cancer organisations
American Cancer Society and their Caregiver Resource Guides.
Caregivers and Family Support by the American Cancer Society.
National Cancer Institute Search engine of resources and information.
Cardiovascular Disease
Peer Support, Patient Groups, Caregiver Groups
A recommendation by Patricia Washburn as a comment to Kristina Adams Waldorf, MD article ‘Low Priority’. Here’s the comment from Patricia that peaked my interest.
I am active as a moderator with AnCan, and I am excited to share that we do have caregiver groups designed for those who have advanced cancer as well as for our Bereaved caregivers/care partners. AnCan is a virtual support group and covers all types of cancer. For anyone who is interested, if you go to AnCan.org you will see the different groups they have available.
From the AnCan website:
Our Vision
AnCan’s vision is to provide easily accessible, inclusive virtual peer support for every serious disease and condition allowing widespread participation, especially to those geographically, physically or socially disadvantaged.
Collaboration with other non-profits underpins our strategy.
Organisations supporting widows and widowers:
A Full Plate with Jeannie Moloo has shared several recommendations:
Modern Widows Club: An international community offering in-person and virtual support groups, events, and resources for widows to connect, find hope, and empower themselves.
Soaring Spirits International: Provides peer support and resources through programs like “Camp Widow,” a weekend gathering for widows, and "Widowed Village," an online community where people can connect and share experiences.
Hope for Widows Foundation: A nonprofit organization providing online support, local chapter meet-ups, and an annual financial grant to help widows in need.
Widowers Support Network: A worldwide organization dedicated to healing hearts and saving lives of men who have lost their spouse or life partner.
National Widowers Organization: A nonprofit organization dedicated to providing support, resources, and advocacy for men who have lost their spouse.
Camp Kesem - A wonderful free summer camp program designed specifically for children who have lost a parent to cancer. It’s run through many universities across the country. The camp creates a supportive environment where children can connect with peers facing similar experiences.
National Alliance for Grieving Children - Offers local and online support groups, resources, and webinars focused on helping grieving children and families. Also, provides education for parents and caregivers on how to support grieving children.
The Dougy Center - Provides peers support groups, grief resources, and advice for parents and caregivers.
CancerCare’s Bereavement Program - Offers professional support for families who have lost a parent to cancer. The programs include counseling, support groups, and workshops.
Canada
Dementia
Alzheimer’s Association Canada Alzheimer’s and Dementia Resources
Alzheimer Society of Canada. There are local affiliates in different provinces. You can find yours here.
The Association of Frontotemporal Degeneration. Resources in Canada
Amyotrophic Lateral Sclerosis
The AlS Society of Canada The ALS Society of Canada is working to change what it means to live with amyotrophic lateral sclerosis, an unrelenting and currently terminal disease.
Cancer
Cardiovascular Disease
Global Useful Websites
Thanks to Emily Wojcik for this useful travel website Wheel the World.
Please ‘❤️’ LIKE the article.
Can you share personal recommendations of organisations in your country that support Carers/caregivers - in the care of their loved one AND of the carer themselves?
Your local ALS Society. In Canada that’s https://als.ca