My plain‑spoken explanation of the titles you meet as dementia progresses — and what they really mean in practice. Roles vary by region, but these were the people who shaped our journey. If there’s a role you’ve encountered that isn’t listed here and you think it would help other family carers, you’re welcome to let me know via the Contact page.
Emergency and Urgent Care
999
The number for life‑threatening emergencies. If you call and it isn’t an emergency, they may redirect you to 111 or a walk‑in centre. Calling 999 as a carer is frightening — you’re often unsure whether something is an emergency.
111
The NHS non‑emergency line. Staff range from call‑handlers to nurses to out‑of‑hours GPs. They triage based on a long telephone assessment. Helpful, but slow, and not dementia‑specialist. Often faster than a non‑urgent 999 call.
Primary Care and Community Support
Carer (Unpaid Family Carer)
A role you never applied for. The NHS uses the word as if you already understand it — but “carer” means you are now part of the care team, expected to observe, report, advocate, and often deliver hands‑on care. You are also entitled to a Carer’s Assessment, though no one tells you that early on.
GP (General Practitioner)
Your main doctor and the gateway to almost all other services. “Come back to me if anything changes” means exactly that — not “off you go.” Availability varies, but the GP practice is usually the anchor point.
Physician Associate (PA)
A medically trained professional who works under the supervision of a GP or consultant. They can assess, examine, and manage many conditions, but cannot prescribe independently. Many carers meet them without realising they are not doctors.
Pharmacist / Pharmacy
A chemist with a qualified pharmacist who can advise on common health problems. Often more accessible than a GP. In late‑stage dementia, pharmacists become crucial — they explain medications, interactions, and how end‑of‑life drugs are supplied.
Practice Nurse
Many carers meet them for vaccinations, wound checks, blood tests, and sometimes dementia reviews. They’re often confused with ANPs or DNs.
Social Worker
Families often don’t understand what they do or don’t do. They are central to Care Act assessments, safeguarding, and arranging care packages.
Mental Health / Specialist teams
CMHT (Community Mental Health Team)
Some areas still use this structure for dementia support. Families often hear the acronym without explanation.
Psychiatrist / Old Age Psychiatrist
Often involved in diagnosis, medication reviews, and complex behaviour. Many carers don’t realise psychiatrists specialise in dementia.
Hospital roles
Ward Sister / Charge Nurse
The person who actually runs the ward day‑to‑day. Families often don’t know who to speak to.
Hospital Discharge Team
A major source of confusion and frustration for carers. They coordinate discharge planning, equipment, and care packages.
Nursing and Home‑Visiting Teams
DN (District Nurse)
Community nurses who visit at home. They handle wound care, catheters, injections, and end‑of‑life support. They were my lifeline — practical, calm, and unafraid of the realities of late dementia.
District Nursing Team / Frailty Team
A multidisciplinary team supporting people with complex needs. They appear when needed, speak a language of their own, but can easily speak yours. They also include the senior nurses who set up and monitor syringe drivers (drug‑drivers) at end of life.
ANP (Advanced Nurse Practitioner)
A highly trained nurse who can diagnose, prescribe, and manage care. Often the most accessible professional in a GP practice or community mental health team. Our ANP was also a consultant nurse — she led Lynn’s Continuing Healthcare (CHC) funding application and coordinated complex care.
Therapy and Specialist Roles
OT (Occupational Therapist)
Not about jobs. They assess safety, equipment, and how to adapt the home. I misunderstood their role at first — they are about enabling daily life, not employment.
Physiotherapist
Supports mobility, strength, and safe movement. In late‑stage dementia, they often focus on comfort, positioning, and preventing pain. Part of the home‑visiting team in our final months.
SLT (Speech and Language Therapist)
Not about speech in late dementia. They assess swallowing, eating, drinking, and communication. I declined a referral because I didn’t know this — a mistake I wouldn’t make again.
Palliative and End‑of‑Life Roles
Hospice / Hospice‑style care (at home)
What it is: A team or approach focused on comfort, dignity, and symptom management in the last weeks or days of life. Increasingly, “hospice” is used in the UK to describe a style of care delivered at home, not just a building or inpatient unit.
Where you might hear it: Professionals may say “hospice‑style care”, “hospice input”, or “hospice at home”. This usually means a community team will support comfort, pain relief, and emotional care at home.
Why it matters: Families often assume “hospice” means immediate death or a move to a hospice building. In practice, it usually means extra support at home, focused on comfort and dignity. It can be a huge relief for families during the final stage of life.
Hospice Nurse
With Hospice care often delivered in people’s homes, a nurse visiting from a Hospice may be who delivers a person’s end of life care in the home.
Macmillan Nurse
Many families assume they are only for cancer — but they often support non‑cancer palliative care too.
Palliative Care Nurse
A specialist nurse who advises on symptom management, comfort, and planning in the palliative and end‑of‑life phases. They don’t usually deliver hands‑on care themselves. Their involvement varies depending on where you live.
Senior District Nurse (Syringe Driver Specialist)
The person who sets up, checks, and adjusts the syringe driver (drug‑driver) at home. They monitor comfort, manage breakthrough symptoms, and are often the most experienced end‑of‑life clinician you will meet.
Funded Care Roles
CHC (Continuing Healthcare) Assessor
A nurse or clinician who evaluates whether someone qualifies for NHS‑funded care based on health needs. The process is complex, slow, and emotionally draining. Our ANP led Lynn’s application — something I didn’t know ANPs could do.
CHC‑Funded Carers / Care Agency Staff
Carers provided through NHS Continuing Healthcare funding. They deliver hands‑on care such as washing, dressing, repositioning, and continence support. Quality varies widely. Some families find them invaluable; others find the experience difficult or inconsistent.
Understanding who does what — especially at the end of life — can make conversations less frightening and decisions easier. Families are rarely taught this, even though they provide most of the care. Educating the unexpected family carer is the fastest, lowest‑cost, most humane way to improve dementia care.