The Reality of Dementia in Wales: What People Don’t See
Dementia isn’t gentle.
It isn’t tidy.
It doesn’t fit neatly into leaflets or awareness campaigns.
It changes people, homes, and relationships until the familiar feels strange.
Most people hear the word, nod politely, and move on — until it comes through their own front door.
Then it stops being an idea and becomes a daily test of patience, guilt, love, and exhaustion.
What Dementia Really Is
Dementia isn’t a single illness.
It’s a group of diseases that damage the brain — most commonly Alzheimer’s, vascular dementia, Lewy body dementia, or frontotemporal dementia.
It affects memory, communication, mood, and perception.
It also affects how families work, how carers survive, and how systems fail.
In Wales, around 50,000 people live with dementia, and that number is rising.
Behind every diagnosis there’s a second person — usually a family member — trying to hold everything together while pretending it’s fine.
It Doesn’t Travel Alone
Dementia rarely arrives by itself.
It can sit alongside mental-health conditions, learning disabilities, or both — and those overlaps are often ignored until crisis point.
Around one in five people with a learning disability will develop dementia, often at a younger age.
Add depression, anxiety, or sensory overload and things get complicated fast.
Behaviour that looks like “confusion” or “agitation” may actually be distress, pain, or panic.
Without trauma-informed understanding, those signals get missed — and people end up labelled instead of helped.
The Carers: Holding Up the System
Carers are the invisible infrastructure of Welsh social care.
More than half of unpaid carers in Wales provide over 50 hours a week of support.
They do this while working, raising kids, or managing their own health.
Carers in Pembrokeshire talk about endless forms, assessment waiting lists, and nights spent keeping an eye on wandering loved ones.
The system calls it “informal care.”
There’s nothing informal about it.
Legal Protections for People with Dementia and Their Carers
The Social Services and Well-being (Wales) Act 2014
This Act underpins almost everything related to care and support in Wales.
It gives individuals and carers the right to have their needs assessed, to be involved in decisions, and to access support that promotes well-being and independence.
Local authorities have a legal duty to:
• assess anyone who may require care or support
• involve the person and their carer in that process
• provide information, advice, and assistance
• safeguard adults at risk of neglect or abuse
A carer’s assessment isn’t optional or charity — it’s a legal entitlement.
It looks at the carer’s own needs, stress, and wellbeing, and can lead to practical or financial support such as respite or equipment.
The Mental Capacity Act 2005
This Act protects the rights of people who may lack capacity to make certain decisions. It says:
• everyone must be assumed to have capacity unless proven otherwise
• people should be supported to make their own decisions where possible
• decisions made on their behalf must be in their best interests and the least restrictive option
It also underpins Lasting Powers of Attorney (LPA) — allowing trusted people to make health, welfare, or financial decisions when someone can no longer do so.
Early conversations about LPA prevent crisis later.
The Health and Social Care (Wales) Act 2025
Expected to strengthen integration between health and social care, this Act aims to make it easier for people with dementia (and their carers) to move between NHS and social-care systems without getting lost in bureaucracy.
Financial Support and Where to Get Help
Understanding benefits isn’t simple.
Forms are long, the language is dense, and the process can feel designed to wear people down.
Advocacy and advice services can help make sense of it.
They can:
• explain what benefits someone may be entitled to, including Attendance Allowance, PIP, Carer’s Allowance, or Council Tax reductions
• help complete applications and gather supporting evidence
• assist with correspondence and preparation for reviews or assessments
• guide people towards specialist advice where needed
Support and advocacy across Pembrokeshire are provided by a number of established organisations.
West Wales Advocacy (WWA) delivers both statutory and non-statutory advocacy under Welsh law, including Independent Mental Capacity Advocate (IMCA) and Independent Mental Health Advocate (IMHA) functions.
Age Cymru Dyfed offers advocacy and advice for older adults and carers, covering statutory duties and wider community-based support.
Pembrokeshire People First (PPF) provides self-advocacy for people with learning disabilities and autism, promoting inclusion and equal rights.
Alongside these, Dyfed Community Advocacy & Guidance (DCAG) provides independent, non-statutory, community-based advocacy to help individuals and families understand their rights and navigate complex systems with confidence.
These organisations work alongside Citizens Advice, which provides qualified benefits advisers and local offices across Wales, and Path (Pembrokeshire Action for the Homeless), which offers tenancy and housing support for those at risk of losing their home.
Together, they form a safety net — ensuring people don’t face complex systems alone or miss help they’re entitled to.
Burnout Isn’t a Buzzword
When you live in constant alert mode — watching for falls, keeping track of medication, managing finances, calming distress — your own body starts to fail.
Carers often describe waking up anxious, going to bed guilty, and losing parts of themselves along the way.
Micro-providers and small community services across West Wales see this daily.
Some are regulated by Care Inspectorate Wales (CIW) because they provide personal care; others offer non-regulated companionship or wellbeing support.
Both types matter.
They are the stop-gaps, the reality buffers, the people who turn up when no one else can.
The Mental-Health Shadow
Dementia changes the person you love, but it also changes you.
Grief starts long before loss.
People talk about the “long goodbye,” but it’s more like a slow unravelling.
Anxiety and depression are common in carers, but rarely discussed.
Talking helps. It doesn’t need a diagnosis or a therapy room — just a safe ear.
That’s where advocacy services — including WWA, Age Cymru Dyfed, PPF, and DCAG — make a difference: translating the language of health and social care, helping families communicate with professionals, or simply sitting with someone long enough to let them breathe.
The Legal Duty to Safeguard
Both the 2014 Act and the Mental Capacity Act make clear that anyone who suspects abuse, neglect, or exploitation — including self-neglect — has the right to raise a concern.
Professionals must take it seriously.
Families often worry that speaking up will cause trouble; in reality, it triggers protection, not punishment.
Advocacy support ensures concerns are raised safely and correctly.
Local Reality: Pembrokeshire and West Wales
Support is there — but you need a map to find it.
Alzheimer’s Society Cymru – dementia support workers and groups
Carers Support West Wales – respite and guidance for unpaid carers
PAVS Community Connectors – linking individuals to local wellbeing services
Hywel Dda UHB Memory Assessment Service – assessment and post-diagnostic care
Pembrokeshire County Council Adult Social Care – referrals and safeguarding
Each plays a role, but most people still need help figuring out which door to knock on first.
The Uncomfortable Truth
You can polish awareness campaigns and print glossy leaflets, but dementia doesn’t live in the gloss.
It lives in the long nights, the unpaid hours, the guilt of snapping at someone you love because you’re exhausted.
It lives in the silence after they ask who you are.
That’s why Wales needs both strong laws and grounded community voices.
Policy gives structure. People give meaning.
Closing Thought
Dementia is a thief.
It steals slowly, but it doesn’t take everything.
With understanding, honest conversation, and the right mix of professional and community support, people can still live well — and carers can still hold on to parts of themselves.
If this article leaves you uneasy, good.
That discomfort is empathy waking up.
Use it. Ask questions. Offer help. Don’t look away.
This article provides factual, non-clinical information based on current Welsh dementia frameworks, legislation, and safeguarding law.
It is not medical advice.
For assessment or diagnosis, contact a GP or the local Memory Assessment Service.
