Learning the language of caring
Whether we have been looking after a family member or friend for a long time, or are new to it, we may find ourselves regularly confronted with words and jargon that we’ve never come across before.
Medical terminology, abbreviations, the names of different benefits, social care options. The language used by healthcare professionals and social services can be confusing and overwhelming, adding an extra layer of stress to an already sometimes overwhelming role.
“Pretty much every term related to care provision and benefits assessments was new to me.”
Results from a recent Mobilise Moment, a survey we run in our weekly emails, showed that over 70% of carers either agreed or strongly agreed with the statement, "When I became a carer, I needed to learn a significant amount of new jargon and terminology, almost like learning a new language."
All these new words can leave us feeling disempowered and less able to speak on behalf of the person we care for.
“I hate it when they send you a letter and it’s all just huge words that sound scary. But when you Google it there is a simpler way of expressing it - I sometimes feel like there’s a power play.”
To help overcome these feelings, we’ve enlisted the power of community. We asked carers what terms have come up during their time looking after someone that they didn’t, or still don’t fully understand, and used their submissions to create a jargon-busting guide.
While this doesn’t cover every term or acronym we may come across in our caring journey, it will clarify some of the more common ones. Helping us to feel more confident, in control, and back in the driving seat.
Benefit and money terms
AA (Attendance Allowance): A benefit for people over state pension age who have a disability that requires someone to help look after them
ACSP (Adult Carer Support Plan): Scotland only - A formal plan to assess and support the needs of adult carers (those aged 18 and over) to ensure that adult carers receive the necessary help to protect their own health and well-being alongside caring
ADP (Adult Disability Payments): Financial support for people in Scotland who have a disability or long-term health condition
CA (Carer's Allowance): A benefit for people who spend at least 35 hours a week caring for someone who is ill or disabled
DLA (Disability Living Allowance): A former benefit for people with disabilities, now replaced by PIP for most adults
DPA (Deferred Payment Agreement): An arrangement that allows people to use the value of their home to help pay for care home costs without having to sell their home during their lifetime
DWP (Department for Work and Pensions): The UK government department responsible for welfare, pensions, and child maintenance policy
ESA (Employment and Support Allowance): A benefit for people who cannot work due to illness or disability
PIP (Personal Independence Payment): A benefit for people in the UK with long-term health conditions or disabilities, helping with the extra costs of living
YCS (Young Carer Statement): Scotland only - Similar to the ACSP but for carers under the age of 18 or those still in school. The YCS focuses the unique challenges faced by young carers, ensuring their ability to participate in school, social activities, and lead a balanced life around caring
Social Care terms
Care plans
CHC (Continuing Healthcare): A package of care arranged and funded solely by the NHS for individuals with significant healthcare needs
EHCP (Education, Health and Care Plan): A legal document that outlines the educational, health, and social care needs of children with special educational needs and disabilities
FNC (Funded Nursing Care): A contribution from the NHS towards the cost of nursing care in a care home
ICA (Individual Care Agreement): A plan for providing care tailored to the individual needs of a person
IEP (Individual Education Plan): A tailored document developed for students with special educational needs, outlining specific learning goals, strategies, and support services required to help them succeed academically
MDT (Multi-Disciplinary Team): A group of professionals from different disciplines who work together to plan and provide care
Caring needs and requirements
Care needs assessment: A thorough evaluation conducted by a healthcare or social services professional to determine an individual's physical, mental, and social care requirements
Carer’s assessment: An evaluation conducted by the local council to determine what support a carer needs
Cognitive function: The ability to process thoughts, including memory, understanding, problem-solving, and decision-making
Cognitive load: The amount of mental effort required to process information, which can be overwhelming in complex care situations
Complex needs: Refers to individuals with multiple and interconnected health and social care needs
ED or Ed Psych (Educational Psychologist): A professional who assesses and supports the learning, emotional, and behavioural development of children and young people in education
SALT (Speech and Language Therapy): Therapy to help individuals with speech, language, and communication problems
SEN (Special Educational Needs): Educational requirements for children who have learning difficulties or disabilities. This is also known as SEND (Special Educational Needs and Disabilities)
SENCo (Special Educational Needs Coordinator): A teacher responsible for coordinating special educational needs provision in a school
“As things advance with my partner's Alzheimer’s needs there are always new terms to learn.”
Caring equipment
Cavilon Barrier Cream: A cream used to protect the skin from moisture, often used in incontinence care
Hoists: Devices used to lift and move patients who have limited mobility, available in different types such as ceiling-mounted, mobile, or bath hoists
Pads, Flushes, Catheters, Slings: Various equipment used in personal care for managing incontinence, administering medication, assisting with mobility, and other care needs
Sara Stedy: A piece of equipment used to help patients stand up and transfer from one place to another
Other social care terminology
Community Psychiatric Nurse (CPN): A mental health professional who provides support, treatment, and care to individuals with mental health conditions in community settings
Empowerment: In social care, this refers to enabling individuals to have control over their own lives and decisions
ICB (Integrated Care Board): Organisations responsible for planning and commissioning healthcare services in a local area. Often used by professionals and staff.
Respite care: Short-term care provided to give us as carers a break from caring, either in the home or in a care facility. Some respite care can be funded by our local council.
Deprivation of Liberty Safeguards (DoLS): A legal framework to protect people in care who lack the capacity to consent to their care and treatment
Deputyship Order: Similar to a POA but granted by the court after a person has already lost mental capacity, appointing a deputy to make decisions on their behalf
No Capacity: A legal term indicating that a person is unable to make decisions for themselves
POA (Power of Attorney): A legal document allowing one person to make decisions on behalf of another, often related to health care or finances. POA often has a specific end date and therefore is ideal for temporary situations
LPA (Lasting Power of Attorney): Similar to POA except it offers longer-term security
Legal terms
Legal terms
Legal terms
Chronic: A health condition or disease that is persistent and long-lasting, typically lasting for three months or more, and often for the remainder of a person's life
DNR (Do Not Resuscitate): A legal order indicating to others, including healthcare staff, that a person does not wish to receive CPR if their heart stops beating. A DNR order can be made by them or us as their carer.
End-of-life care: A specific form of care provided to individuals who are in the final stages of life
HDU (High Dependency Unit): A hospital unit for patients who require a higher level of care and monitoring than a general ward can provide but not as much as an ICU
ICU (Intensive Care Unit): A special department of a hospital that provides intensive treatment and monitoring for critically ill patients
Palliative care: Care that focuses on providing relief from the symptoms and stress of a serious illness
“There’s been so many medical terms to learn, but I am getting there.”
There are many medical terms which will be unique to our cared-for’s condition, symptoms and treatment. The NHS have shared a helpful glossary, and an additional list of common abbreviations which can help. But remember, we should always feel empowered to ask the doctor if there is anything we don’t understand.
“Don't get me started! In the world of Parkinson's there are so many new words we have had to learn. I google, ask other people who have experience of Parkinson's, and if I'm feeling brave I ask the doctors.”
What's next?
Navigating the complexities of caring for a family member or friend can be challenging enough without the added burden of unfamiliar jargon and terminology. We hope this guide has shed light on some of the common terms and acronyms we may encounter, making it easier to advocate for and support those we look after.
Remember, you're not alone in this journey - there's a community of others going through similar challenges. If you ever find yourself baffled by new terms, or if we’ve missed one off the list, just share them in the Mobilise Hub. Together, we can start to demystify the language of caring.