Written by Jonathan Hanbury, Founder and Clinical Lead of The Ness Care Group. Jonathan has more than 20 years of NHS clinical and leadership experience, with specialist knowledge of dementia, cognitive health and complex care.
What is dementia?
Dementia is an umbrella term for conditions that cause progressive changes in memory, thinking, communication and everyday abilities. Alzheimer’s disease is the most common cause, although there are several other types.
Dementia mostly affects people in later life, but it is not an inevitable part of ageing and younger people can also develop it.
I have previously written about the importance of an early diagnosis. It can help someone access treatment, support and advice while they are still able to take an active part in decisions.
Mild Cognitive Impairment, or MCI, is not dementia and does not always progress to dementia. However, noticeable changes in memory or thinking should still be discussed with a GP.
The Ness works with individuals and families from the point where memory changes first become noticeable through to the more complex stages of dementia.
In more than 20 years of clinical work, I have seen outstanding care and, sadly, occasions when families have been left with very little guidance. With expert support, meaningful activity and strong social connections, many people can continue living active, fulfilling lives for years.
When someone becomes isolated, under-stimulated or physically unwell, their confidence and everyday function can be affected much more quickly.
Too often, we still stick our heads in the sand. Starting the right conversations early gives the person and family more choices.
What are the three stages of dementia?
Dementia can develop over many years, but the rate and pattern of change vary considerably.
Some professionals describe seven stages. For simplicity, I have divided the pathway into three broad stages: mild, moderate and advanced.
These stages are a guide rather than a timetable. A person may show changes associated with more than one stage and everyone experiences dementia differently.
Families can sometimes feel that they receive a diagnosis and are then sent back into the community without a clear plan. Dementia should be approached as a long-term condition that needs review, treatment, planning and support for both the person and those close to them.
Stage 1: What support helps in mild or early-stage dementia?
The early stage is a valuable time, but it can be squandered when people are frightened of acknowledging memory problems or do not know where to seek help.
Mild Cognitive Impairment (MCI) is not itself a stage of dementia, but people with MCI and early-stage dementia may have similar needs for information, cognitive activity, social connection and future planning.
At this stage, individuals and families should seek a GP appointment and begin actively supporting memory, reasoning, language and confidence.
Medicines may be offered for some types of dementia, while non-drug treatments and practical changes can help someone manage symptoms and remain independent. The NHS confirms that although there is no cure for dementia, medicines and other treatments can help with symptoms.
If a GP does not immediately refer someone to a memory service, the family does not have to do nothing. You can gather information, record changes and introduce purposeful cognitive and social activity while seeking further medical advice.
Active cognitive work
Think of the brain in a similar way to a back or hip that needs regular, purposeful exercise.
Active cognitive work may include specialist Cognitive Stimulation Therapy, community learning, language activities, memory games, digital activities, conversation and new experiences.
This should be conscious and require some planning. A target can sometimes be helpful. For example, someone might aim for four hours of active cognitive stimulation each week, with some delivered through The Ness or another structured group and some continued at home.
The amount should suit the person rather than becoming another test.
NICE recommends group Cognitive Stimulation Therapy for people living with mild to moderate dementia. University College London describes CST as an evidence-based intervention shown to improve cognition and quality of life.
Social contact
The second area is maintaining good social contact with friends, family, groups, neighbours and people outside the person’s usual circle.
A person may withdraw because conversation has become harder or they are worried about mistakes. It can help to be open about memory changes so that other people slow down, reduce background noise and give the person time to contribute.
Alongside cognitive and social stimulation, three physical areas deserve attention:
Hearing: Make sure hearing is assessed and any hearing aids work properly. Hearing loss can make communication and social participation harder. Hearing aids can help someone remain connected and engaged, although current NICE guidance does not claim that hearing aids prevent dementia.
Sleep: Poor sleep can affect concentration, mood and memory. If sleep changes significantly, seek advice from a GP.
Cardiovascular health: Blood pressure, physical activity, smoking, alcohol and diet are particularly important where vascular disease contributes to cognitive change. Treatment of vascular risk factors may help prevent further damage and slow progression in vascular dementia.
Many people still have insight into changes in their memory, planning or understanding at this stage. Insight can reduce as dementia progresses, so this is a useful time to discuss wishes and ask for professional help.
It is also a good time to consider the two types of Lasting Power of Attorney (LPA): health and welfare, and property and financial affairs.
An LPA must be made while the person has the mental capacity to understand and agree to it.
Stage 2: What support helps in mild to moderate dementia?
The middle stage can be challenging for both the person living with dementia and those supporting them.
Changes in memory, language, logic, empathy and understanding can make the world feel confusing or frightening. The person may misinterpret what is happening, become anxious or respond in ways that others find difficult to understand.
A clear diagnosis remains helpful because it can open access to treatment, social care and community support. It can also help families understand that unfamiliar behaviour may be linked to changes in the brain rather than deliberate awkwardness.
This is a time to make full use of local support.
Specialist dementia services can provide structured cognitive treatment and help for families, while memory cafés, charities and voluntary groups can continue to offer valuable friendship, information and peer support.
Regular cognitive and social support
People living with mild to moderate dementia should have access to regular, purposeful cognitive and social activity.
NICE recommends group Cognitive Stimulation Therapy at this stage, although it does not prescribe one universal weekly frequency.
At The Ness, our Memory Hubs provide ongoing cognitive stimulation, therapeutic activity and social support. We plan activities around clear aims and review how each person responds over time. The Ness Cognitive Model is built around planned outcomes, active therapy, measurement, review and adaptation.
Preventing isolation and carer exhaustion
Some people begin following their main family carer very closely, a pattern sometimes called “shadowing”. They may become anxious when their carer leaves the room, distrust unfamiliar people or resist new situations.
This places enormous pressure on the primary carer. Families should introduce trusted support early, encourage safe social contact and allow other people to build relationships with the person.
Physical health remains important.
Constipation, pain, dehydration, medication effects and infections can all cause a sudden increase in confusion. A sudden change should not simply be accepted as dementia getting worse.
It may be delirium and needs urgent medical assessment. The NHS advises immediate medical help when someone suddenly becomes confused.
What support does the family carer need?
This part of the journey can last for years. The person providing most of the support must protect their own health and identity rather than waiting until they are exhausted.
This may require:
- regular time away from caring
- occasional overnight breaks
- a carer’s assessment
- respite support
- peer support from people in similar situations
- professional advice about difficult or changing behaviour
- clear information about dementia and what may happen next
The Ness runs free monthly carer support groups at our Memory Hubs. These provide a friendly and confidential place to talk, ask questions and meet other people who understand the pressures of supporting someone with dementia.
Families can also contact The Ness for a conversation or practical advice, even if the person they support does not attend one of our groups or Memory Hubs.
We provide both online and face-to-face dementia training for family members and informal carers. These sessions help families understand how dementia affects the brain, why certain changes in behaviour or communication may occur and how they can respond in practical ways.
Our carer support groups and informal advice are free. Details of current training sessions and any associated costs are available through The Ness.
NICE advises that carers should receive information about their right to a carer’s assessment, respite and other support.
Accepting help is not abandoning the person. It is one of the things that can make continued care at home possible.
Stage 3: What support helps in advanced dementia?
In the advanced stage, support has to widen to meet the person’s increasing physical, emotional and communication needs while also protecting those caring for them.
This stage can be emotionally and physically exhausting. The person may need extensive help with communication, eating, drinking, mobility, continence and personal care.
However, it is wrong to assume that someone has no awareness of the world around them.
Even in advanced dementia, a person may respond to a familiar voice, music, touch, facial expression or sense of comfort. They may still feel an emotional connection to people and their environment even when they cannot express it in words.
The priorities are to:
- keep the person comfortable and emotionally settled
- notice pain, infection, hunger, thirst and other unmet needs
- use familiar routines and non-verbal communication
- give the family practical help, information and respite
- review care plans and the person’s previously expressed wishes
At this stage, the primary carer may be providing support throughout the day and night. No one should be expected to manage this alone.
Families may need:
Information: Navigating NHS, social care, home-care, respite and residential options can be difficult.
Respite: Planned breaks can help a family member continue caring safely.
NHS and social-care support: Ask for assessments even where the person is financially independent.
Peer and professional support: Talking to people who understand the pressure can reduce isolation.
Financial planning: Independent financial and legal advice may be useful.
Advance and palliative care planning: Planning ahead can help families understand how and where the person would prefer to be cared for. The NHS recommends reviewing care plans and recording end-of-life wishes while the person can still contribute.
Many people with advanced dementia eventually need continuous professional care, whether at home or in a residential setting. The timing and form of that care vary.
If exhaustion or changing needs lead a family to consider residential care, they should not feel guilty. Seeking a safer level of support is part of responding to the illness, not a failure of love or commitment.
Conclusion
I have broken the dementia journey into three broad stages and outlined some of the actions that can help during each period.
No short article can cover every situation. Dementia affects people differently, and support should change as the person’s abilities, health and family circumstances change.
The main message is not to wait for a crisis.
Seek medical advice, specialist cognitive support, social connection and practical help early. With the right support, the journey can be more stable, more informed and less isolating for the person living with dementia and those around them.
The Ness supports individuals and families from memory changes and MCI through to the more complex stages of dementia.
Find out more about our Cognitive Stimulation Therapy courses, Memory Hubs and family support, contact us on 01626 774799 or email info@nesscaregroup.co.uk.