Making Sense of Dementia



As a dementia friend on a mission to improve the lives of people living with this devastating disease, an important part of my role is to help more people understand the illness and identify the symptoms.

This is the first in a series of dementia awareness posts that break dementia down into “bite size” chunks of information.

Please share it with your friends as ONE IN FIVE of us will develop this disease – and need support & understanding to get through it.


Each person experiences dementia in their own way, but the way the condition progresses can be seen as a series of stages. This factsheet outlines the characteristics of the early, middle and late stages of Alzheimer’s disease and briefly looks at how other forms of dementia progress.

While it can be helpful for planning ahead to have some awareness of the likely progression of a person’s dementia, it is important to realise that everyone’s experience will be different. It is much more important to focus on trying to live well with dementia, meeting the needs of the person at that time, than to focus only on which stage they are in.

Dementia as a progressive condition

The most common types of dementia – Alzheimer’s disease, vascular dementia, dementia with Lewy bodies and frontotemporal dementia – are all progressive. This means that the structure and chemistry of the brain become increasingly damaged over time. The person’s ability to remember, understand, reason and communicate will gradually decline. As dementia worsens, the person will need more and more support with daily living. Their behaviour and mood will also change.

Health professionals often use scales to measure these changes. At different times they may assess a person’s mental ability (eg Mini Mental State Examination), daily living skills (eg dressing, managing medication), behaviours, overall functioning or quality of life. Some of these scales were developed specifically for Alzheimer’s disease and work better for that than for other types of dementia. Assessment of the extent of someone’s dementia should take account of these scales but should also take a broader view of the person, including their capabilities and needs.

Looking at dementia as a series of three stages – early, middle and late – can be a useful way of understanding the changes that occur over time. However, it is important to realise that this view of dementia can only provide a rough guide to the course of the illness. This is because:

  • some symptoms may appear earlier or later than indicated here, in a different order, or not at all
  • the stages may overlap – the person may need help with one task, but may be able to manage another activity on their own
  • some symptoms, such as irritability, may appear at one stage and then vanish, while others, such as memory loss, will worsen over time.

The way that a person experiences dementia will depend on many factors. These include their physical make-up, other illnesses they may have, their emotional resilience, the medication they take and the support they can rely on.

Before dementia develops

There is good evidence that, by the time most people develop any symptoms of dementia, the underlying disease has been causing damage to their brain for years. Researchers are very interested in this ‘pre-symptomatic’ period and have developed tests to look at the brain chemistry, function and structure at this time. It is likely that any medication designed to slow down or prevent the diseases that cause dementia would work in this early phase, before the disease is fully established.

Over time, the changes in the brain will begin to cause mild symptoms, but which are initially not bad enough to count as dementia. Subtle problems in areas such as memory, reasoning, planning or judgement may cause difficulties with more demanding tasks (eg preparing a meal) but they will not yet significantly affect daily life. A person at this stage may be given a diagnosis of mild cognitive impairment (MCI). About 10-15 per cent of people with this diagnosis will go on to develop dementia each year. For more information see factsheet 470, Mild cognitive impairment.

Rate of progression

The speed at which dementia worsens varies widely. There are some differences between the different dementias – Alzheimer’s disease, for example, seems to have the slowest progression on average – but much of the variation is from person to person.

A wide range of factors influence how quickly someone’s dementia will progress. These include age – people who develop symptoms before 65 often have a faster progression. Evidence also suggests that a person’s genes play a role, as does someone’s overall physical health. People with poorly controlled heart conditions or diabetes, those who have had several strokes or those who have repeated infections are all likely to have a faster deterioration.

On the positive side, there is some evidence that keeping active and involved can help a person with dementia retain abilities for longer. Regular physical exercise in particular seems to slow the rate of decline. For more information see factsheet 529, Exercise and physical activity.

Some of these factors affect the underlying disease processes in the brain, while others do not but still help with dementia symptoms. Those supporting someone with dementia should help them to stay active – physically, mentally and socially. The person with dementia should also try to eat healthily, get enough sleep, take medications as advised and not smoke or drink too much alcohol. It is also important for the person to have regular check-ups (for eyes, ears, teeth and feet) and vaccinations, and to keep a careful eye on underlying health conditions. A sudden change in the person’s abilities or behaviour could indicate a physical or psychological health problem or an infection.

Next time we’ll look at the different types od dementia in more detail.





“Dementia Atlas” Launch Helps Put Golf In Society On The “Dementia Map”

As the government launched its “dementia atlas” today, most of the media channels have been covering dementia in their features. Some of the stories are devastating – but sadly &#…

Source: “Dementia Atlas” Launch Helps Put Golf In Society On The “Dementia Map”

“Dementia Atlas” Launch Helps Put Golf In Society On The “Dementia Map”


As the government launched its “dementia atlas” today, most of the media channels have been covering dementia in their features. Some of the stories are devastating – but sadly – too common. It’s tragic that dementia care provision is so erratic across the UK. Days like today are very important in raising awareness about living with dementia – as long as we listen to, learn from and respond to, the challenges facing dementia carers.

Until you have lived with, and lost a loved one to dementia – you cannot truly understand how traumatic it can be. As a dementia carer you “step into” and “step out of” peoples lives – which is far easier than the devastation of seeing your partner slowly “disappear” before your very eyes.

However, when you “step into their lives” it’s amazing the positive impact you can have – not only on the person with dementia – but their carer too. As dementia care providers, we should not underestimate the difference we make – for some families it’s priceless support in times of desperation.

At Golf In Society we “step in and out” of people’s lives – but whilst we’re in there we do something very special indeed.

The feature on Radio 4 today will help put Golf In Society on the “dementia care map” for more families desperate for support.

Have a listen to the link below to hear the difference we’re making to people’s lives in Lincolnshire.    (31mins 50 seconds into the programme)




Dementia Golf Proving To Be A Winner In House Of Commons


A Member of Parliament has praised Lincoln Golf Centre in the House of Commons for its incredible work in using golf to improve the lives of people living with dementia.

Lincoln MP Karl McCartney brought up the club during a parliamentary discussion on the social and economic value of the sport.

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Last November Lincoln GC became the UK’s first ‘dementia friendly golf club’ when, following work with the Alzheimer’s Society, it began using golf to tailor a physical, mental and social stimulation service to each dementia client.

A mental health expert called the service ‘marvellous’ and feedback from clients has been positive.

“Golf adds such value to our economy, to employment, to our environment and to our public health,” said McCartney.

“The aim is to change the perception of golf. Some great work has been done by England Golf and all four home unions have specific projects in inner city areas, including the national Get Into Golf campaign and help for those with disabilities to take part in the sport.

“Lincoln Golf Centre recently launched a project to help people with dementia to play and continue to play golf, which is happily hosted by [Lincoln GC owner] Brian Logan and supported by Anthony Blackburn, founder of Golf In Society [an organisation that aims to make a positive contribution to the health and wellbeing of local communities through golf]. Before Easter I was invited to meet players and their families, friends and carers, some of whom enjoyed a morning of respite while their husbands, wives, friends or partners enjoyed some golf.”

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Anthony Blackburn said: “To witness the positive impact we’ve had on people’s lives has been the most rewarding part of the venture.

“Dementia touches each person differently, that’s why you can’t just take a generic approach when designing a dementia service, it’s crucial to be able to personalise the delivery and content.

“The relaxed and enjoyable sessions, delivered in beautiful natural surroundings by compassionate people, is proving to be a winning formula.”

He quoted the wife of one client, Nicholas, who played a round at the golf centre: “He was thrilled and I’m printing off some of the pictures to put in a memory book of recent events for him. Nicholas has remembered the event this morning and he’ll be keeping hold of the golf ball you gave him to help remind him of the day.”


Brian Logan said: “We are so proud to be part of this initiative. If we can help local people less fortunate than ourselves to discover a better life through golf, then it’s got to be good for everyone in the Lincoln area.”

Danny Walsh, senior lecturer (mental health nursing) at Lincoln University said: “This is a marvellous initiative which is likely to make a significant and very positive impact upon the lives of those people living with dementia and their carers who take part in it.”

Jamie Blair, England Golf’s disability manager, said: “We can establish more clubs within the county to ensure we keep people playing golf as part of a healthy and active lifestyle for those diagnosed with dementia.”