What Support Is Available as Dementia Progresses? What Happens After Diagnosis

A dementia diagnosis can bring relief that there is an explanation, but also a lot of uncertainty about what happens next. Many people describe the journey up to diagnosis as very structured – GP appointments, memory tests, scans – and then suddenly feeling on their own once the diagnosis is given.

This guide sets out, in clear, practical terms, what usually happens after a diagnosis in the UK, who is involved, and how families can get help as dementia progresses. It is written for anyone who is living with, or caring for someone with, dementia.

From First Concerns to Diagnosis

GP appointment and initial checks

For most people, the first step is a longer appointment with the GP. The GP will usually:

• Ask about changes in memory, thinking, mood, and everyday life
• Take a medical history and review current medications
• Check for other causes of symptoms (for example infections, thyroid problems, low vitamin levels, depression)
• Often carry out a short memory and thinking test such as the Mini Mental State Examination (MMSE), which briefly checks orientation, attention, and recall

If the GP is concerned that dementia may be present, they usually refer to a specialist memory service or Memory Clinic for more detailed assessment.

Memory Clinic assessment

At the Memory Clinic, the team will look more closely at how the brain is working day to day. This often includes:

• A longer cognitive test such as the Addenbrooke’s Cognitive Examination (ACE-III), which looks at attention, memory, language, visuospatial skills, and problem-solving
• Brain imaging, usually a CT (computed tomography) or MRI (magnetic resonance imaging) scan, to check for strokes, shrinkage, or other changes that might help explain symptoms
• Questions about daily life – what is going smoothly, what has changed, and which tasks are becoming more difficult
• Screening for low mood, anxiety, sleep problems, or other health issues that can affect thinking

If CT or MRI results are unclear, or if there is still doubt about the type of dementia, more advanced scans may sometimes be used:

• PET (positron emission tomography) and SPECT (single-photon emission computed tomography) scans look at how well different parts of the brain are working and how blood flows through them, rather than just showing the structure of the brain.
• These scans can help specialists distinguish between conditions such as Alzheimer’s disease, vascular dementia, and some other, less common, types of dementia.

Not everyone needs PET or SPECT scans. They tend to be used when the picture is complicated or when confirming the type of dementia would make a clear difference to treatment or care.

Once the assessments are complete, the Memory Clinic will usually:

• Explain the diagnosis (for example, Alzheimer’s disease, vascular dementia, or mixed dementia – never a diagnosis of “dementia”)
• Discuss treatment options, including any medication that may help with symptoms or slow progression in early Alzheimer’s disease
• Offer information, signposting, and sometimes referral to dementia advice services
• Review the effect of any new medication over several weeks or months

When things are relatively stable, the Memory Clinic normally discharges the person back to the GP, who becomes the main point of medical contact going forwards.

What Happens After Discharge from the Memory Clinic?

Ongoing reviews with the GP

After discharge, the GP is responsible for most ongoing medical care. In many areas, people living with dementia should be offered:

• An annual dementia review that looks at:
  • Physical health and long-term conditions (such as diabetes or heart disease)
  • Medication, including whether it is still appropriate and well tolerated
  • Changes in memory, thinking, and day-to-day functioning
  • Mood, anxiety, sleep, and any distressing symptoms
  • Risks such as falls, dehydration, or leaving the house unsafely
  • Carer wellbeing, stress, and what support is available for the carer

In addition to the annual review, families can request a GP appointment at any point if there are new concerns or noticeable changes.

Re-referral to memory services

If there is a significant change – for example:

• A sudden or step-like worsening of confusion
• Marked change in mood, behaviour, or sleep
• Concerns that current dementia medication is causing side effects or no longer helping

the GP can re-refer the person to the Memory Clinic or older people’s mental health team. This might be to:

• Review and adjust medication
• Reassess the type or stage of dementia
• Seek specialist input from psychology, occupational therapy, or nursing teams

It is quite normal for people to move back and forth between GP care and memory services over the course of the dementia.

Adult Social Care: Assessments and Practical Help

Care and Support Needs Assessment

Alongside health services, local authorities have responsibilities under the Care Act 2014. One of the key duties is to carry out a Care and Support Needs Assessment for any adult who appears to need care and support.

This assessment can usually be requested by:

• The person living with dementia
• A family member or carer (with the person’s consent where possible)
• A professional such as a GP, nurse, dementia adviser, or social prescriber

The assessment looks at how well the person can:

• Manage personal care (washing, dressing, continence)
• Prepare and eat food and drink
• Move around safely at home and outside
• Keep their home clean, safe, and habitable
• Maintain relationships and social contact
• Stay involved in work, volunteering, or meaningful activities where relevant
• Stay safe from harm, neglect, or exploitation

The outcome might be:

• A written support plan
• Equipment or home adaptations (for example rails, ramps, shower chairs)
• Home care or sitting services
• Day opportunities or group activities
• Respite or short breaks
• Signposting to other community and voluntary services

Carer’s Assessment

Carers also have a legal right to their own Carer’s Assessment. This focuses on the carer’s situation and needs, not just the person they support. It may explore:

• Physical and mental health
• Stress, sleep, and levels of exhaustion
• Impact on work, education, and family life
• How sustainable the current caring role feels
• Need for breaks, respite, or extra help
• What would happen if the carer became ill or could not continue

Support might include information and advice, access to groups or training, one-to-one support, respite, or help with forward planning.

The Multi-Disciplinary Team (MDT)

Many areas bring professionals together into a Multi-Disciplinary Team (MDT). This might include:

• Social workers
• Occupational therapists
• Physiotherapists
• Community psychiatric nurses or mental health practitioners
• Reablement or intermediate care staff
• Housing and adaptations specialists
• Welfare rights or benefits advisers
• Falls prevention or frailty teams

The MDT can help with:

• Equipment and adaptations to make the home safer
• Falls prevention, mobility, and safe moving and handling
• Planning the right level of care at home
• Short-term “reablement” after illness or hospital stays
• Exploring day opportunities, respite, or care home options when needed

Dementia Advisers

In many areas, dementia advisers or dementia support workers are available, often through local charities or NHS services. Their role is to walk alongside the person and family over time, offering:

• Clear information after diagnosis, at a pace that feels manageable
• Help in understanding symptoms and progression
• Support with navigating NHS, social care, and benefits systems
• Emotional support and a consistent person to talk to
• Signposting to local groups, dementia-friendly activities, and carer training
• Check-in calls at key points such as after hospital stays or major changes

They often act as a bridge between families and services, especially when people are unsure who to contact.

Carer Advisers and Carer Support Services

Some areas have carer advisers or specialist carer support workers. These roles focus on the needs and rights of the person providing care. They can help with:

• Understanding carers’ rights and what support is available
• Applying for Carer’s Allowance and other financial help
• Completing forms, blue badge applications, and related paperwork
• Preparing for meetings and assessments
• Exploring respite and short break options
• Finding peer support groups and training opportunities

Carer services often run cafés, drop-ins, and peer groups where carers can connect with others in similar situations.

Social Prescribers: Support Beyond the Diagnosis

Social prescribing is a way of connecting people with non-medical, community-based support that can improve wellbeing. Social prescribers may be called Social Prescribing Link Workers, Care Coordinators, or similar titles. They typically help by:

• Linking people to activity groups, exercise classes, walking groups, or hobby clubs
• Finding dementia-friendly cafés, groups, or day activities
• Connecting to money advice, housing support, or community hubs if needed
• Reducing loneliness and isolation through social contact and meaningful activity
• Supporting people to re-discover interests that are not only about illness or caring roles

Access to social prescribers is often through GP practices, Primary Care Networks, or local voluntary sector partners. Practice websites, local council pages, or community sector organisations are good places to find local details.

Community and Voluntary Organisations

Community and voluntary organisations play a vital role in how supported people feel day to day. These may include:

• Dementia-specific activity groups and day services
• Reminiscence, music, arts, or gardening groups
• Carer cafés and peer support groups
• Advice lines and helplines for information and emotional support
• Local charities offering advocacy and practical help with forms or appeals

These services help people hold on to identity, social contact, and enjoyment – not just manage symptoms and appointments.

How Do Families Know If It Is Still Safe to Stay at Home?

One of the hardest questions families face is whether it is still safe for the person to stay at home. In most situations, unless there is a serious safeguarding concern, the decision about care at home versus care in a residential or nursing home rests with the person (if they have capacity) and those closest to them, with support from professionals.

It may be time to review things if any of the following are happening:

• Frequent falls or injuries
• Leaving the house and becoming lost or unsafe outside
• Fire or kitchen risks (for example pans left burning, cooker repeatedly left on)
• Medication being missed, duplicated, or taken incorrectly
• Ongoing weight loss, poor eating or drinking, or signs of self-neglect
• Significant night-time wandering, distress, or disturbed sleep
• Carers becoming exhausted, unwell, or unable to continue safely
• Behaviour that creates serious risk to the person or to others

Any of these concerns can be discussed with the GP, social worker, dementia adviser, community nurse, or carer support service. Support can often be increased at home – for example through more care visits, equipment, technology, or day services – before a move to residential care is considered.

When Safeguarding May Be Involved

Safeguarding is about protecting adults who cannot always protect themselves from harm, neglect, or exploitation. A safeguarding referral may be made if someone with dementia is, for example:

• At serious or immediate risk of harm
• Living in conditions that put health or safety at risk
• Experiencing neglect (intentional or unintentional)
• Being financially exploited or abused
• At risk due to severe self-neglect or behaviour they cannot understand or control

A safeguarding enquiry does not automatically mean someone will be moved into care. The aim is to understand the risks, listen to the person’s wishes where possible, and put a plan in place to reduce harm. This might include extra support at home, changes to the environment, or, in some cases, exploring alternative living arrangements.

Key Points at a Glance

• The usual pathway is: GP assessment → Memory Clinic → diagnosis and early support → ongoing reviews with the GP, with the option of re-referral to specialist services when needed.
• Memory services use cognitive tests and brain imaging (CT or MRI), and sometimes PET or SPECT scans, to help clarify the type of dementia.
• People living with dementia should be offered regular reviews, including at least an annual dementia review with their GP.
• Local authorities must assess adults who may need care and support, and carers have a legal right to their own Carer’s Assessment.
• Dementia advisers, carer advisers, social prescribers, and multi-disciplinary teams each play a different but complementary role in support.
• Community and voluntary organisations provide much of the day-to-day emotional, social, and practical support that keeps people connected and active.
• Decisions about whether care at home is still safe are usually made by the person and their family, with professional guidance, unless there is a serious safeguarding concern.

Useful Resources

• Alzheimer’s Society – What happens after a dementia diagnosis?
• NHS – Dementia: Services and support
• Dementia UK – Admiral Nurse Helpline and support
• Age UK – Caring for someone with dementia
• Stockton-on-Tees Borough Council – Adult social care
• Hartlepool & Stockton Health – Social prescribing and personalised care