“Dementia-friendly” can mean nothing at all — a sticker in a shop window and a paragraph on a council website. Used properly it means something concrete: a diagnosis that arrives in months rather than years, a bus driver who waits, a police force that already holds the information it needs, and somewhere to go on a Tuesday afternoon that nobody has to explain themselves in.
Worthing and Adur have a high proportion of older residents and a correspondingly developed set of dementia services. This guide covers how the diagnostic pathway works here, what exists once you have a diagnosis, and the practical schemes families discover far too late.
Getting a diagnosis: the memory assessment pathway
Everything starts at the GP, and nothing bypasses them. A memory clinic will not take a self-referral. What the GP does first is rule out the impostors — an underactive thyroid, B12 or folate deficiency, depression, a urinary infection, sleep apnoea, or a side effect of medication. Several of these produce memory symptoms indistinguishable from early dementia to a family, and several are reversible. Blood tests and a short cognitive check are the usual starting point.
If the GP is not satisfied, the referral goes to the Memory Assessment Service run by Sussex Partnership NHS Foundation Trust, which covers West Sussex. That service takes the history, repeats cognitive testing in more depth, arranges a brain scan where it will change the answer, and gives the diagnosis and subtype. It also prescribes and reviews dementia medication where appropriate, and is the route to post-diagnostic support.
Three things worth knowing before the appointment:
- Take someone who has noticed the changes. The informant history is often more diagnostically useful than the testing. Write down specific incidents with dates rather than “he’s been forgetful”.
- Do not let the appointment be cancelled because “there’s no point, there’s no cure”. A diagnosis is what unlocks medication, Attendance Allowance, Council Tax disregard, Lasting Power of Attorney while capacity remains, and every service below.
- Ask for the subtype in writing. Alzheimer’s, vascular, Lewy body and frontotemporal dementia behave differently and are managed differently — some antipsychotics are dangerous in Lewy body dementia specifically.
If you are still at the “is this something or nothing” stage, our guide to the early signs of dementia sets out what is worth acting on.
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The first month after a diagnosis
Most families do nothing for six months, then do everything in a panic. A better order:
- Lasting Power of Attorney, both types. Property and financial affairs, and health and welfare. These can only be made while the person still has capacity to make them, and early dementia does not remove capacity. Miss this window and the family faces a Court of Protection deputyship application instead — slower, far more expensive, and supervised.
- Claim Attendance Allowance. £76.70 or £114.60 a week, not means-tested, savings irrelevant. It is about needing help, not receiving it.
- Apply for the Council Tax severe mental impairment disregard through Adur & Worthing Councils. A formal dementia diagnosis plus a qualifying benefit can remove one person from the count entirely — a 25% discount, or in some cases an exemption. Backdating is sometimes possible.
- Register with Alzheimer’s Society for a Dementia Support Worker and post-diagnostic support.
- Tell the DVLA. A dementia diagnosis must be notified. It does not automatically end driving, but failing to notify invalidates insurance.
- Register the carer at the GP surgery and with Carers Support West Sussex — see our carer support directory.
- Complete a Herbert Protocol form before anyone gets lost, not after.
The Herbert Protocol
Sussex Police operate the Herbert Protocol, a national scheme used across the force area. You complete a form in advance holding the information officers would otherwise have to extract from a distressed family at the worst possible moment: a recent photograph, medication, places of significance, previous addresses and workplaces, routines, and where they have gone before.
You keep the form at home and hand it over only if someone goes missing. It typically saves the first half hour of a search, and the first half hour is the one that matters. The form is available from the Sussex Police website and through local dementia services. Fill it in on a calm day and update the photograph annually.
One thing to record properly: people with dementia who walk are usually walking somewhere, not wandering aimlessly, and the destination is often an old home, an old workplace or a childhood route. List those addresses even if they are two hundred miles away.
Getting out: transport, parking and safe walking
Blue Badges for non-visible disabilities
Since 2019 the Blue Badge scheme in England has covered non-visible conditions, and dementia is squarely within scope. Eligibility rests on whether the journey from a vehicle causes very considerable psychological distress, risk of serious harm, or overwhelming difficulty in planning and following a route — not on walking distance. Applications go through West Sussex County Council via gov.uk. Supporting evidence from a clinician or the memory service makes a material difference, and plenty of valid applications are refused first time and won on review, so appeal rather than abandoning it.
Local travel
A bus pass, a companion who travels free where eligible, and rehearsing one route repeatedly is usually more sustainable than a taxi account. Worthing and Shoreham seafronts, Highdown, and the level promenades are the easiest local walking for someone who tires or becomes disoriented, because the route is linear and the sea is a permanent orientation cue. For anyone who has stopped driving, see transport support for older adults and community access support.
Technology, used sparingly
GPS trackers, phone location-sharing, door sensors and community alarms through Adur & Worthing Councils all have a place. The rule is that technology should reduce restriction, not add it — a tracker that lets someone keep walking to the shop is good; a tracker used as a substitute for company is not. Decisions that limit someone’s freedom should involve them while they can take part.
Memory cafés, singing groups and activities
There is a good network of memory cafés, dementia-friendly singing groups, activity sessions, museum and library programmes and carer groups across Worthing, Goring, Durrington, Shoreham, Lancing and Southwick, run through churches, community centres, libraries and charities. Timetables and venues change often enough that printing them is a disservice — Alzheimer’s Society, Carers Support West Sussex, Age UK West Sussex and the council’s Connect to Support West Sussex directory all keep live listings.
What is worth knowing is which type suits which stage. Memory cafés work best early and mid-stage, and are as much for the carer as the person. Singing and music groups keep working long after conversation has become difficult, because musical memory is unusually durable — people who cannot recall the morning will sing every verse. Activity and day services give the carer a genuine block of hours. Go twice before deciding; first visits are almost always uncomfortable.
Dementia Friends and dementia-friendly businesses
Dementia Friends is an Alzheimer’s Society initiative: a short free session explaining what dementia does and how to respond. Shops, banks, pharmacies, libraries and surgeries across the area have put staff through it, and Worthing and Adur both have local dementia action networks. In practice it shows up as a till operator who waits while someone counts coins.
It is worth telling the places someone uses regularly — the pharmacy, the corner shop, the bank branch — that they have dementia. Almost everyone responds well, and it heads off the incident that otherwise makes a family stop going out.
Where the council fits in
West Sussex County Council is responsible for adult social care: the free needs assessment, the financial assessment, carer’s assessments, day services and commissioned home care. Adur & Worthing Councils handle Council Tax, community alarms, and Disabled Facilities Grants of up to £30,000 towards adaptations.
For care at home, remember the property is not counted in the financial assessment — a point that changes the arithmetic for many families comparing options. Our funding guide covers the thresholds, and dementia care at home covers what good support actually looks like day to day.
Frequently asked questions
How do I get a dementia diagnosis in Worthing?
Start with the GP, who will run blood tests and a cognitive check to rule out reversible causes such as thyroid problems, B12 deficiency, infection, depression or medication effects. If concerns remain, they refer to the Memory Assessment Service run by Sussex Partnership NHS Foundation Trust for fuller assessment, scanning where needed, and diagnosis.
What is the Herbert Protocol in Sussex?
A Sussex Police scheme where families complete a form in advance holding a recent photograph, medication, routines, past addresses and places of significance for someone at risk of going missing. You keep it at home and hand it over if they do go missing, which saves searchers the crucial first half hour.
Can someone with dementia get a Blue Badge?
Often, yes. The English Blue Badge scheme covers non-visible disabilities, and eligibility turns on very considerable psychological distress, risk of serious harm, or overwhelming difficulty planning a journey — not on walking distance. Apply through West Sussex County Council via gov.uk, include clinical evidence, and appeal a first refusal.
Are there memory cafés in Worthing and Adur?
Yes — memory cafés, singing groups, activity sessions and carer groups run across Worthing, Goring, Durrington, Shoreham, Lancing and Southwick through churches, libraries and community centres. Venues and times change, so check current listings with Alzheimer’s Society, Age UK West Sussex, Carers Support West Sussex or Connect to Support West Sussex.
What should we do first after a dementia diagnosis?
Set up both types of Lasting Power of Attorney while capacity remains, claim Attendance Allowance at £76.70 or £114.60 a week, apply for the Council Tax severe mental impairment disregard, notify the DVLA, register with Alzheimer’s Society, and complete a Herbert Protocol form before it is needed.
The Care Panel is an independent publication. We are not a care provider and are not regulated by the Care Quality Commission, because we do not deliver care. Always check a provider’s own CQC registration and inspection report before you commit.
Written and fact-checked by The Care Panel. Last updated September 2026. Sources: NHS guidance on dementia diagnosis, Sussex Partnership NHS Foundation Trust Memory Assessment Service, Sussex Police guidance on the Herbert Protocol, gov.uk Blue Badge and Attendance Allowance guidance, Alzheimer’s Society and Dementia UK. General information, not medical advice.