For Carers and Family: where to start

Who is a carer?

If you provide regular support to a family member or friend with dementia, you are a carer, whether or not you live with them, whether or not you receive Carer's Allowance, and whether or not anyone has called you a carer. Recognising the role is the first step to accessing the help that is available.

Approximately 700,000 people in the UK provide informal care to someone with dementia. Most do so without specialist training, often alongside work and family responsibilities. The support that exists is for you, not just for the person you care for.

The first six months

After a diagnosis, three areas need attention in the first six months:

1. The legal and financial groundwork. Put a Lasting Power of Attorney in place for both health and finance while capacity is intact. Review benefits eligibility (Attendance Allowance, Carer's Allowance, council tax reductions). Update wills.
2. The medical plan. Make sure the GP has the assessment letter. Check the medication review, vascular risk plan and follow-up arrangements. Register with the local memory clinic if not already done.
3. The support network. Connect with the Alzheimer's Society Dementia Connect Support Line, identify a local Memory Cafe, consider an Admiral Nurse referral, and tell trusted family and friends.

The key pages for carers

• Looking after yourself: sleep, mood, exercise, time off, and how to recognise carer burnout.
• Communicating with someone with dementia: short sentences, eye contact, validation rather than correction.
• Managing difficult behaviours at home: the PINCH-ME approach, de-escalation, environment.
• Helping with personal care: dignity, consent, and reducing distress around washing and dressing.
• Managing medication safely at home: Dosette boxes, prompts, what to do if a dose is missed.
• Respite care: how to access daytime, overnight and longer respite.
• Carer's Allowance and financial support: eligibility, how to apply, what else is available.
• Admiral Nurses: specialist dementia nurses, where they are based, how to access.
• Talking to children and grandchildren: age-appropriate explanations.
• End-of-life care: what to expect, when to ask for palliative care, anticipatory grief.

Helplines and direct support

• Alzheimer's Society Dementia Connect Support Line: 0333 150 3456;
• Dementia UK Admiral Nurse Dementia Helpline: 0800 888 6678;
• Carers UK Helpline: 0808 808 7777;
• Samaritans (24 hours): 116 123;
• NHS 111 for non-urgent health concerns; 999 in emergency.

Carer assessments and rights

Under the Care Act 2014 (England), the Social Services and Well-being (Wales) Act, and equivalent legislation in Scotland and Northern Ireland, you have a legal right to a free Carer's Assessment from your local authority. The assessment looks at your needs separately from those of the person you care for, and can result in practical support: regular respite, equipment, training, or financial help.

Request an assessment by contacting your local council's adult social care team. You do not need to wait for the person you care for to be assessed.

If you are still working

If you are employed alongside caring, you have rights:

• The right to request flexible working (Employment Rights Act 1996, as amended);
• The right to unpaid Carer's Leave (Carer's Leave Act 2023, in force from April 2024, gives one week per year);
• The right to time off for dependants in emergency;
• Protection from discrimination under the Equality Act 2010.

Discuss with your line manager and HR. Many employers have specific carer policies that go beyond the statutory minimum.

Looking after yourself is not optional

Carer burnout is common, with rates of depression and anxiety in family carers of people with dementia far higher than the general population. The most effective protection is structured time off, sleep, exercise, social contact and ongoing peer support. The looking after yourself page sets out the practical steps.

Where The Dementia Service fits in

The Dementia Service, the leading UK Private Memory Clinic, often works with carers as the family's first port of call. The structured assessment letter is shared with you (with consent), and follow-up appointments commonly include the carer. If a private second opinion or a fresh structured review would help, the service can usually arrange an appointment within a few weeks.