Dad worked multiple jobs while studying at a dental college. He later moved to Lowestoft where he met Mum and built a successful dental practice. He also had a passion for chemistry and electronics. Growing up, I often found him in his electronics room at home, which was filled with the various contraptions he was working on.

Fitness was also central to his identity – even now, at 80 years old, he can run and do push-ups. As children, my older brother, Christopher, and I went on long, meandering walks with Dad. One time, we walked the outer perimeter of Pleasurewood Hills Family Theme Park while hearing children’s laughter from inside. We find this hilarious now. It wasn’t cruel – it was simply Dad sharing time with us in the way he understood best.

“In 2022, Dad was diagnosed with Alzheimer’s disease”

We noticed subtle changes in Dad when he was in his early 60s. He would recall events that had not happened, or adopt our memories as his own. Then, in 2019, Dad had a stroke. Physically, he recovered quickly, but we saw a clear decline in his cognitive ability after this. He had larger memory lapses, found daily activities increasingly difficult, and frequently recounted memories that had not happened.

Dad had an exceptional memory for numbers, but one time he forgot his PIN number at a cash machine. His temperament also shifted at times, with him becoming unusually irritable and agitated. These were brief but noticeable changes from the person we knew.

In 2022, Dad was diagnosed with mild cognitive impairment, and later with Alzheimer’s disease at the age of 76.

Although he was open to seeking a diagnosis, Dad was terrified. I remember him saying that the doctor told him he had one brain cell left and that his brain scans were completely dark. I think his Alzheimer’s diagnosis and fear had twisted his memories of these medical appointments.

I think the diagnosis became real to Dad when he had to surrender his driving licence. His confusion behind the wheel was becoming very dangerous, but as a family, we felt such guilt for telling the GP that we thought Dad’s driving was no longer safe. He found this loss of freedom and independence extremely hard.

“The Admiral Nurse visited Mum and was a huge help”

As his dementia progressed, Dad became increasingly dependent on Mum. He experienced separation anxiety and panicked when Mum left the room, even to go to the toilet. She was his full-time carer and was physically and emotionally exhausted.

Mum first had contact with a dementia specialist Admiral Nurse in December 2023, after being referred to the service by her GP. At the time, she was at breaking point.

The Admiral Nurse visited Mum and was a huge help. She answered Mum’s questions about Alzheimer’s disease and shared advice around her role as a carer. The Admiral Nurse also encouraged Dad to continue his hobbies, so he took part in a few woodworking sessions which he really enjoyed.

“The emotional impact of Dad’s diagnosis is profound”

As Dad’s needs increased, it became clear that he needed specialist long-term dementia care. Mum resisted moving Dad into a care home for as long as possible. She felt incredible guilt that she was betraying him. I felt this also, but I knew that if she remained Dad’s only carer, I would lose her as well. This is what pushed me towards finding a care home for Dad. The Admiral Nurse supported us in our search for a suitable care home, reassuring us that she was just at the end of the phone if we had any questions.

After trial periods in various care homes, we eventually found a good placement for Dad. The initial transition into the care home was very difficult. Dad was confused and distressed – he even broke windows and climbed fences in an attempt to leave. But the care home was great at safely adapting to better support him, and Dad is now much more settled.

Mum and I visit Dad in the care home every week, but the emotional impact of his dementia diagnosis remains profound. Watching someone you love change so dramatically, while still seeing glimpses of the person they were, is incredibly painful.

“Music has become our bridge”

I play the drums, and before Dad moved into the care home we used to have weekly drumming sessions. I’ve brought my electronic drum kit with me a few times when visiting Dad at the care home. Dad loves music by The Rolling Stones, so we drum along to his favourite songs, putting on a show for the other residents. He instinctively joins in on the drum kit – although his memories are fading, his love of music remains strong.

During one visit, I recorded this video of Dad playing along to a song I wrote, called ‘This shrinking world’, which is inspired by his dementia journey. The song is written from his perspective, capturing the confusion, fear and emotional disorientation that a dementia diagnosis can bring. While this version is instrumental, I am working with a singer on a vocal version. Music is the best way for me to honestly express my feelings.

In these moments shared with Dad, there is recognition without the need for words. We reconnect through our shared love of music, which I hope always remains.

I have seen some people completely withdraw from Dad since his diagnosis, which is really sad. Sometimes people get frightened by the word ‘dementia’, seeing the condition more than the person living with the diagnosis. But I still see my dad. He will always be Dad, first and foremost.

The post Jon’s story – “Music has become our bridge” appeared first on Dementia UK.

Lewy body dementia is an overarching term for a set of complex and challenging conditions that can be mistaken for Alzheimer’s disease due to the overlap in symptoms. This means it may be misdiagnosed. However, getting an accurate diagnosis as early as possible will enable the right support to be put in place to help manage its progression and maintain the person’s quality of life.

Our dementia specialist Admiral Nurses explain what Lewy body dementia is, its subtypes and how to manage the condition.

What is a Lewy body?

Lewy bodies are abnormal clumps of protein that develop in nerve cells in the brain. The reasons for this are not yet fully understood, although research is ongoing.

How Lewy bodies affect the brain

Lewy bodies affect the normal functioning of brain cells. They can build up in any part of the brain but are most common in the areas responsible for thought, movement, visual perception, sleep and alertness.

The connection between dementia and Lewy bodies

Lewy body dementia is an umbrella term for two different types of dementia: dementia with Lewy bodies and Parkinson’s dementia. The main difference between the two types of Lewy body dementia is when specific symptoms first occur. In dementia with Lewy bodies, usually cognitive changes will happen first, while in Parkinson’s dementia, usually physical changes will happen first.

Parkinson’s dementia

Lewy bodies are present in people who have Parkinson’s, usually in the areas of the brain responsible for movement. Not everyone with Parkinson’s will develop dementia, but about one third will, with the risk increasing the longer people live with the condition.

Dementia with Lewy bodies

Dementia with Lewy bodies is caused by a build-up of Lewy bodies in the areas of the brain that control alertness, visual perception and thinking. This interrupts the connections between brain cells and can eventually stop them from working. It also reduces the chemicals that are needed in the brain to function properly.

Lewy body dementia and Alzheimer’s disease

In the early stages, Lewy body dementia is often mistaken for Alzheimer’s disease, as some of the symptoms are similar – for example, problems with thinking and perception. However, it differs from Alzheimer’s disease in that it can particularly affect the person’s movement (Parkinsonism), and can cause hallucinations, delusions, and changes in alertness.

Signs and symptoms of dementia with Lewy bodies

The symptoms of dementia with Lewy bodies are complex and may differ depending on whether a person has dementia with Lewy bodies or Parkinson’s dementia. Not everyone will experience all the symptoms or develop them at the same time.

Early signs

In dementia with Lewy bodies, cognitive changes usually happen first. These can include:

• changes in thinking
• difficulties with visual perception (eg spatial awareness, misinterpreting visual information)
• memory loss (although this is often not the first symptom)
• increasing difficulty with managing everyday tasks
• problems with staying alert

These symptoms tend to occur at least one year before, or at the same time as, the person develops problems with movement.

In Parkinson’s dementia, physical changes happen first. These include difficulties with movement (Parkinsonism) such as tremors, rigidity or slowness. Other problems may include sleep disturbance, dizziness and poor balance, changes in bowel or bladder function, difficulty regulating body temperature and a loss of sense of smell. These symptoms usually develop one year or more before cognitive changes become apparent.

Cognitive symptoms

A person with dementia with Lewy bodies may experience changes in their mental function, including:

• difficulty with organising, planning and carrying out everyday tasks, such as handling money, using a phone or computer and using household appliances
• difficulty with remembering events or names of familiar people (this may be more pronounced in later stages)
• recurring visual hallucinations – seeing things that are not there, usually people or animals. These may be pleasant or upsetting
• delusional ideas which may be linked to visual hallucinations – for example, a feeling of being watched or misidentifying familiar people (Capgras syndrome)
• disturbed sleep – known as rapid eye movement (REM) sleep disorder, in which people are restless and can experience intense dreams or nightmares

Memory problems are often less common in the early stages than in some other forms of dementia.

Behavioural symptoms

Dementia with Lewy bodies may cause changes in behaviour such as sudden changes and fluctuations in alertness – people may stare blankly into space for periods of time, seem drowsy and lethargic and spend a lot of time sleeping. As the condition progresses, some people experience periods of unresponsiveness.

Physical symptoms

Physical symptoms tend to be more pronounced in Parkinson’s dementia than Lewy body dementia, particularly in the early stages. They include movement problems such as:

• slowed movement, difficulty walking, shuffling, appearing rigid, ‘freezing’ (as in Parkinson’s)
• tremors – usually in the hands, particularly during movement
• problems with balance and being prone to falls

Other physical symptoms can include (although will not be experienced by everyone):

• low blood pressure on standing up – known as orthostatic or postural hypotension
• bladder sensitivity – particularly at night
• constipation
• swallowing problems
• impaired sense of smell
• increased salivation or drooling
• excessive sweating
• softer speech and/or problems saying specific words

Psychological symptoms

Psychological symptoms often occur in dementia with Lewy bodies and may include:

• delusions: a fixed belief about something that is not true. These often have a ‘theme’ in Lewy body dementia – for example, some people experience Capgras syndrome, where they believe that a family member or friend has been replaced by an imposter. Other common themes are feeling as though someone is watching them or ‘out to get them’. These can be linked to hallucinations – for instance, they may believe they can see people in their home
• depression: persistent low mood and feelings of hopelessness which can result in poor sleep and appetite and loss of interest in previous activities
• apathy: where someone appears to be indifferent or lacks initiative. This can occur independently of depression
• anxiety: intense feelings of fear or unease which can result in symptoms including a racing heart, sweating and panic attacks

How common is Lewy body dementia?

Dementia with Lewy bodies accounts for 10-15% of diagnoses of dementia, although some studies suggest it may be up to 20%. Around 10% of people with young onset dementia (where symptoms develop before the age of 65) have Lewy body dementia.

Diagnosis of Lewy body dementia

Getting an accurate diagnosis of Lewy body dementia is important to ensure the person receives the right treatment and support. This process begins with seeing the GP. If they believe the person is showing signs of Lewy body dementia, they should refer them to a memory clinic or dementia service and/or a movement disorder/Parkinson’s service. This may depend on which symptoms appear first.

The diagnostic process includes taking a family and medical history, asking the person (and a family member or other person close to them, if possible) about their symptoms, and assessing their physical health. The person carrying out the assessment should ask about:

• difficulties with memory
• their ability to carry out their usual activities
• changes in behaviour and mood
• changes in alertness
• whether they are seeing/hearing things
• their sleep patterns

Basic cognitive tests may be carried out to check the person’s visual/spatial abilities and memory, alongside an assessment of motor (physical) function, eg tremors, problems with gait (how the person walks) and rigidity.

If the diagnosis is not clear following specialist assessment, a specific scan may be required to measure levels of the chemical dopamine, which are usually low in people with Lewy body dementia. This is called a SPECT scan or DaTSCAN. It involves having an injection of a special radioactive substance, usually into a vein in the arm, which helps show how much dopamine is being transported in the brain. The dose of radiation is very small and is quickly eliminated from the body.

Investigations for other symptoms of Lewy body dementia may include:

• myocardial perfusion scintigraphy: used to measure blood flow to the heart and to detect orthostatic hypotension. This involves an injection of a radioactive substance, followed by monitoring the person’s heart using electrodes (sticky pads) stuck to the chest, and a scan of their heart
• polysomnography: a study of someone’s sleep that monitors brain waves and other functions to help diagnose sleep disorders, including REM sleep disorder. This involves the person having electrodes stuck to their head, chest, legs and fingertips; a video camera will also monitor their activity whilst they sleep. It is usually done at a specialist sleep clinic

Challenges of diagnosing Lewy body dementia

Lewy body dementia can be difficult to diagnose in the early stages because its symptoms often overlap with Alzheimer’s disease or psychosis (a psychological condition where the person sees, hears or believes things that are not real). Many cases are initially misdiagnosed or overlooked because of this, but as more symptoms develop, such as visual hallucinations, movement problems or sleep disturbances, doctors can usually identify Lewy body dementia more accurately.

If you think the person has been misdiagnosed or their condition has changed, ask the GP to make a referral for further assessment. This may be with a neurologist for motor symptoms or a dementia specialist for cognitive or psychological symptoms.

Treatment for Lewy body dementia

People with Lewy body dementia may be offered medication, alongside other treatments, to help with their symptoms. These will not stop or reverse the progression of the condition but may improve quality of life for them and their families and carers.

Medications

Some of the medications used to treat Alzheimer’s disease may help with the cognitive symptoms of Lewy body dementia, for example, by reducing distressing hallucinations and improving concentration and memory problems. These are usually most effective in the early to middle stages, but do not help everyone.

It is important to know that many people with Lewy body dementia are particularly sensitive to medications known as antipsychotics, which are sometimes used to treat hallucinations. Only certain types, known as atypical antipsychotics, should be used, and even then, with extreme caution.

Medications used for Parkinson’s may be helpful, but again, caution is required as certain medications or higher doses may make hallucinations worse.

If you have any concerns about the introduction of a new medication or change in treatment or notice any side effects, discuss this with the person’s GP or specialist as soon as possible.

Other treatments focus on symptom control and are detailed below.

Physiotherapy

Physiotherapy can help with managing some of the symptoms of Lewy body dementia. Exercises to strengthen the leg muscles can improve posture and coordination and teach the person safer movement strategies. Stretching and gentle aerobic exercise can also help reduce pain from muscle stiffness.

Music and art therapy

Music and art therapy can help to improve mood, reduce agitation and enhance communication. Music in particular is known to stimulate memory while songs with a steady beat can improve gait and reduce freezing episodes. Read more about music and dementia.

Cognitive training

Activities designed to exercise and improve specific cognitive functions like memory and problem-solving can help slow the decline in a person’s cognitive abilities. This is sometimes referred to as cognitive stimulation therapy. These activities include puzzles, memory games and computer-based programs. Word games and sorting tasks can also help reduce apathy and provide a sense of accomplishment.

Progression of dementia with Lewy bodies

It is hard to predict how quickly Lewy body dementia will progress, and each person will have their own experience, so it is better to focus on maintaining quality of life and enjoying time together than on how quickly they will deteriorate. However, it is generally considered to progress in three stages.

Early stage

In the early stages of Lewy body dementia, people can often manage simple tasks but may struggle with complex activities such as finances and driving. They may experience disturbances in their perception and can misinterpret things, sometimes leading to visual hallucinations, but often retain insight into what is happening. Fluctuations in awareness or thinking are common, and people may appear to have lost focus or concentration. Up to 90% of people with Lewy body dementia are found to have experienced sleep disturbances before their diagnosis.

Middle stage

In the middle stages of Lewy body dementia, the person will usually need more assistance with things such as dressing, bathing and preparing meals. They may have difficulty recognising familiar places or people and may need supervision because of the risk of falls and hallucinations. The person may struggle with communication and experience increasing anxiety, low mood and fluctuations in awareness or concentration.

Late stage

In the later stages of Lewy body dementia, a person experiences an increasing decline in cognitive and physical abilities. They are likely to have difficulty with verbal communication and may become unable to recognise their surroundings or loved ones. The person may eventually be unable to leave their bed and require full-time care. They may still experience hallucinations, even if they cannot express that this is happening. They may also experience difficulties swallowing and be susceptible to infections.

Prognosis

The progression of Lewy body dementia can vary significantly from person to person. Over time, most people will need support at home, and some may eventually need to move into a nursing home.

Living with Lewy body dementia

With support, a person with Lewy body dementia can maintain their quality of life for as long as possible. Strategies that may help include:

• ensuring the person eats well
• making sure they drink enough fluids
• making adaptations to their home so it is safe and comfortable: for example, you can reduce the incidence of misperception by removing patterned carpets/curtains etc
• exploring new ways to communicate if verbal communication becomes difficult
• using living aids and assistive technology to make everyday activities easier
• ensuring the person takes any medication correctly
• applying for a needs assessment to assess what support they need
• applying for all the financial benefits that they are entitled to
• learning strategies for managing hallucinations and delusions
• supporting them to be physically active in a way that is safe for them

Activities for people with Lewy body dementia

Meaningful activities can help a person with Lewy body dementia maintain their independence, quality of life, self-esteem and social connections. You can encourage them to continue with their usual routines and activities, such as work, everyday tasks (with support if necessary), spending time with family and friends, hobbies and travel.

The person may also like to try new activities to maintain their motor and cognitive function, for example joining a community group such as a choir or book club, learning a skill like a language or craft, trying a new sport or physical activity that suits their level of ability, or joining support groups for people in similar situations.

Bear in mind that everyone with dementia will have their own strengths and abilities, and their usual activities will need to adapt as their condition progresses. However, with support, the person can live as well as possible with Lewy body dementia, for as long as possible.

Support for people with Lewy body dementia

For more information visit lewybody.org. You can also phone our free Dementia Helpline to speak to a dementia specialist Admiral Nurse about Lewy body dementia on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm), email helpline@dementiauk.org or you can pre-book an appointment by phone or video call with an Admiral Nurse.

The post Dementia with Lewy bodies appeared first on Dementia UK.

This page, written by our dementia specialist Admiral Nurses, explores the symptoms, causes and possible treatment of Alzheimer’s disease.

What is Alzheimer’s disease?

Alzheimer’s disease is a type of dementia that mostly affects older adults, but it can also develop in younger people under the age of 65, when it is known as ‘young onset Alzheimer’s disease’. It causes problems with memory, thinking and behaviour. As a progressive condition, it will affect more and more aspects of a person’s life over time.

How does Alzheimer’s disease differ from other types of dementia?

There are many different forms of dementia, all of which are progressive conditions that cause damage to the brain.

Unlike other types of dementia, Alzheimer’s disease is thought to be caused by the abnormal build-up of two proteins in the brain, ‘amyloid’ and ‘tau’. These form structures called ‘plaques’ and ‘tangles’, which damage the brain cells. Alzheimer’s disease also reduces the levels of chemical messengers in the brain (‘neurotransmitters’) which makes it harder for messages to pass between brain cells.

As Alzheimer’s disease progresses, brain cells continue to die and parts of the brain shrink, and the levels of neurotransmitters decrease further.

Different forms of dementia have different symptoms, but in Alzheimer’s disease, the most common early sign is difficulty with memory.

How common is Alzheimer’s disease?

Alzheimer’s disease is the most common form of dementia, affecting one in 14 people over the age of 65, and one in six people over the age of 80.

It can also affect younger people and is the most common form of young onset dementia (where symptoms develop before the age of 65).

Common signs and symptoms of Alzheimer’s disease

It can be helpful to think of dementia progressing in three stages – early, middle and late stages.

Early signs of Alzheimer’s disease

The most noticeable early sign of Alzheimer’s disease is usually difficulty with memory, especially short-term memory. The person might:

• forget recent events or conversations (but they might have clear memories of the past)
• misplace items or put them in the wrong place (eg putting their keys in the fridge)
• forget appointments
• forget the names of people, objects or places
• struggle to find the right words
• repeat themselves

Other early symptoms may include:

• mood and personality changes
• feeling unsettled by unfamiliar situations or changes in routine
• becoming withdrawn
• difficulty making decisions

In the early stages of Alzheimer’s disease, the symptoms may be mild, but they can still be extremely frustrating for the person and those around them, especially if they do not understand why the changes are happening.

Symptoms of middle stage Alzheimer’s disease

In the middle stages, symptoms may include:

• increasing confusion and disorientation, eg getting lost in familiar places
• delusions (believing things that are not true, eg that a family member is trying to steal money from them)
• hallucinations (seeing or hearing things that are not there, eg a stranger in their home)
• obsessive or repetitive behaviours
• problems with speech and language
• disturbed sleep
• difficulty with spatial awareness, eg judging speed and distances

Symptoms of late stage Alzheimer’s disease

In the late stages of Alzheimer’s disease, new symptoms may develop, including:

• distressed, frustrated or angry behaviour as the person struggles to express themselves
• incontinence
• difficulty eating and swallowing
• loss of speech
• mobility problems
• weight loss
• becoming increasingly weak and frail
• frequent infections
• bouts of delirium

How quickly does Alzheimer’s disease progress?

Alzheimer’s progresses gradually; however, each person’s experience is different and it is impossible to predict how quickly they will deteriorate.

Getting an accurate diagnosis of Alzheimer’s disease as early as possible is important, as treatments to help slow its progress tend to be most effective in the early stages. A timely diagnosis also means support can be put in place to help maintain the person’s quality of life.

There is currently no cure to stop or reverse the disease.

Causes and risk factors

There are a number of causes and risk factors for Alzheimer’s disease. Some are unavoidable, but others could be reduced through lifestyle changes. Some of the causes include:

Age

Age is the biggest risk factor for developing Alzheimer’s disease. The older someone is, the more likely it becomes, but it can also occur in younger people under the age of 65.

Underlying health conditions

Some health problems can raise the risk of getting Alzheimer’s disease. These include heart and blood vessel issues such as high blood pressure and diabetes as well as obesity. People with learning disabilities, particularly Down’s syndrome, are also more likely to develop Alzheimer’s disease.

Family history

In rare cases, Alzheimer’s disease is caused by a genetic fault that runs in families, but this accounts for fewer than 1% of all people diagnosed with the condition. Alzheimer’s disease is more likely to be inherited in people whose parents developed the condition at a very young age.

Read more about genetic forms of dementia.

Sex and ethnic background

Women are slightly more likely to develop Alzheimer’s disease than men, and there is some evidence that people from African-Caribbean and South Asian backgrounds may be more at risk.

Lifestyle

Although age is the biggest factor for Alzheimer’s disease, studies suggest that the way we live can also influence our chances of developing this and other forms of dementia. Here, we list some of the lifestyle factors that could increase the risk.

Diet

A diet high in processed foods, sugar and unhealthy fats may increase the risk of Alzheimer’s disease because it can lead to conditions that affect the heart and circulatory system (cardiovascular conditions) and reduce blood flow to the brain.

The risk of developing these conditions and others than are linked to dementia can be reduced by eating a healthy, balanced diet. The NHS Eatwell Guide can help you understand which foods to eat to improve and maintain your physical and mental health.

There is also a link between alcohol and developing dementia so it’s important to keep drinking within the recommended limits.

Exercise

A lack of regular exercise can contribute to the risk of developing Alzheimer’s disease, as well as other forms of dementia. Exercise improves heart health and helps blood flow and oxygen delivery to the brain, which supports cognitive function.

Smoking

Smoking increases a person’s risk of developing dementia by damaging blood vessels and reducing blood flow to the brain. This can increase the risk of Alzheimer’s disease. Some studies show that smoking increases the risk of developing dementia by 30-50% but quitting smoking, even later in life, can reduce the risk of cognitive decline and improve overall brain health.

Sleep

It’s thought that a lack of sleep, or poor quality sleep, can lead to a build-up of proteins in the brain, which may increase the risk of Alzheimer’s disease. How much each person needs will vary, but six to eight hours’ uninterrupted sleep is ideal for most people.  The NHS has information on improving sleep.

Reducing your risk of Alzheimer’s disease

Although there is no guaranteed way to prevent Alzheimer’s disease, certain steps may help reduce the risk:

• stopping smoking
• keeping alcohol consumption within recommended limits
• eating a healthy, balanced diet with at least five portions of fruit and vegetables a day
• aiming to exercise at least five days a week for 30 minutes or more at a time
• ensuring you take any medication prescribed for diabetes, heart conditions, depression and other physical/mental health problems
• asking your GP for regular health checks, including blood pressure checks and blood tests
• having your hearing and eyesight checked regularly
• staying mentally and socially active, for example, by taking part in group activities, volunteering, reading or learning a new skill like a language or photography

Diagnosing Alzheimer’s disease

It may take several appointments and tests over a number of months to get a diagnosis of Alzheimer’s disease. This is particularly true for younger people, who typically face a much longer wait to get a diagnosis than older people.

If dementia is diagnosed early, there may be more treatment options, and support can be put in place sooner.

Medical tests

The first port of call if you are worried about symptoms of Alzheimer’s disease in yourself or someone else is the GP. They will rule out any underlying physical or mental health issues that may be contributing to the symptoms, many of which can be treated. These include depression, anxiety, vitamin deficiency, diabetes, hormonal conditions or menopause. They will ask the person:

• what their symptoms are
• when they started
• how they affect their daily life
• their family history
• their medical history

It is a good idea to keep a record of symptoms, triggers and how they affect the person to show the GP. The GP should carry out some simple physical tests, such as a blood pressure check, and refer the person for blood tests. They may request an ECG (a check of heart rhythm) and a brain scan.

Cognitive assessments

A short memory and concentration test (often known as the ‘mini mental state examination’) should be carried out by a GP as part of the assessment. This may include:

• stating the day, date and year
• naming pictures of some common objects, eg keys, kettle
• remembering and repeating a list of items
• completing a simple drawing, eg putting numbers on a clock face

If the tests rule out other conditions that may be causing the person’s symptoms, the GP should refer them to a specialist memory clinic for more detailed assessments. These may be carried out by a nurse, psychiatrist, neurologist or elderly care specialist.

Brain imaging

The person may also have further scans such as an MRI or CT scan – these produce detailed images of the brain and may show changes associated with Alzheimer’s disease or other conditions.

Preparing to speak to the doctor

It is a good idea to prepare for the appointment to ensure you get the most out of your time with the healthcare professional.

• If there is a particular GP you would like to see you can request this, although it may mean waiting longer for an appointment.
• Write down the most important things you want to discuss. If there are more than two or three things, you may wish to book a double appointment
• Keep a record of any changes in symptoms or behaviour
• Make a list of any medications being taken, including prescribed medications, over-the-counter medications, vitamin supplements and natural remedies
• If you are seeing the GP about your own symptoms, ask someone to accompany you – this may make you feel more comfortable, and they can share their own thoughts about the situation
• If you need a chaperone or interpreter, inform the surgery in advance
• If someone close to you is seeing the GP about their symptoms, it is a good idea to go with them so you can discuss anything you have noticed and offer support

Find out how to best prepare for a GP appointment.

Treatment for Alzheimer’s disease

There is currently no cure for Alzheimer’s disease. However, for some people, medication can improve the symptoms and slow its progression.

Medication

The main medications for Alzheimer’s disease are donepezil, rivastigmine and galantamine. These work by increasing the levels of a chemical called acetylcholine in the brain, which helps the brain cells communicate with each other. They are only effective in the early to middle stages of Alzheimer’s disease, and they depend on the person being physically fit and well, and able to remember to take the medication at the same time each day.

Another medication, called memantine, may be prescribed for moderate to severe Alzheimer’s disease, or if the person cannot tolerate the other treatments.

Cognitive therapy

Cognitive stimulation therapy (CST)

CST is a type of therapy that involves taking part in activities to improve memory, language skills and problem-solving abilities. It often takes place in a group, which can also provide opportunities to socialise and share experiences, but may be offered one-to-one. The memory clinic will be able to tell you if this is available in your area.

Cognitive rehabilitation

This involves working with a specialist – usually an occupational therapist – along with a family member or friend to find ways to manage particular tasks, such as using a mobile phone or cooking a meal. The aim is to get the parts of the brain that still work well to help the parts that do not. It can also be personally satisfying to accomplish a task that the person finds difficult.

Reminiscence and life story work

Many people with Alzheimer’s disease have difficulty with short-term memory, but longer-term memories may remain intact for some time. Reminiscence and life story work focus on skills, achievements and happy memories, and can improve mood and wellbeing.

Reminiscence work involves the person talking to a family member, friend or professional about their past, often using prompts such as photos, music or favourite possessions.

Life story work involves compiling a record of the person’s life, for example:

• personal details
• important relationships with family and friends
• their childhood history
• past and present employment
• important people and places
• key events from their past
• likes and dislikes
• spiritual/cultural beliefs

Life expectancy for people with Alzheimer’s disease

On average, people with Alzheimer’s disease live four to eight years after diagnosis, but some can live as long as 20 years or more. The life expectancy for people with Alzheimer’s disease varies widely depending on many factors, including age and the stage of the disease at diagnosis, other medical conditions and overall health.

It is impossible to predict the exact length of time someone may have; instead, focus on maintaining quality of life/enjoying time together rather than speculating how long they may have left.

How does Alzheimer’s disease cause you to die?

As Alzheimer’s progresses, damage to the brain affects critical functions such as breathing, mobility and swallowing. This can lead to complications like falls, infections such as pneumonia, and malnutrition. Many people with Alzheimer’s disease become increasingly frail and are unable to recover from these complications.

Living with Alzheimer’s disease

Living with Alzheimer’s disease can be difficult for the person with the diagnosis and those around them, especially as the symptoms progress. These tips may make living with the condition easier:

• Find out about local dementia services like support groups, day centres and memory cafés
• Try to keep to a daily routine to provide familiarity and stability
• Stay socially connected by continuing current activities or trying new ones
• Carry a form of identity with details of the diagnosis in case of getting lost or needing assistance outside the home – this could be sewn into a coat or bag
• A sunflower lanyard from the Hidden Disabilities store or a similar badge/ID card can be helpful to alert members of the public that the person may need support

Supporting someone with Alzheimer’s disease

While the symptoms of Alzheimer’s disease always worsen over time, a good routine and support network can help the person with the diagnosis maintain their independence and quality of life for as long as possible.

• Complete a Herbert Protocol form: a record of important information about the person that can help the police locate them if they go missing
• Look into assistive products that make daily living easier, such as medication organisers, dementia clocks and personal fall alarms
• Take a tour around the person’s home to identify possible hazards – find out how to make the home safe and comfortable
• Request a needs assessment (for the person with dementia) and a carer’s assessment (for their carer) to establish what equipment and support is available
• Encourage the person to carry on with their daily activities as far as possible to help them maintain their skills
• Be realistic about your ability to care for the person – in the middle to late stages of Alzheimer’s disease, it may be necessary to use paid carers or consider a move into a care home

Common misconceptions

Some common misconceptions about getting a diagnosis of Alzheimer’s disease are:

• You have to stop driving immediately
• You have to give up work
• You will immediately lose the ability to make decisions (loss of capacity)
• Someone else will have to manage your finances
• Alzheimer’s disease only affects older people
• Everyone with Alzheimer’s disease will have to move into a care home

While these things are likely to happen as dementia progresses, people in the early stages of Alzheimer’s disease may be able to continue with many of their usual activities with minimal changes.

The post Alzheimer’s disease appeared first on Dementia UK.

Dementia causes changes in memory, thinking, personality and behaviour, but symptoms vary depending on which type the person has. Getting a diagnosis of the specific type of dementia means people can get the right support to help them live better with the condition.

Here’s what you need to know about some of the most common forms of dementia, including Alzheimer’s disease, vascular dementia and frontotemporal dementia.

The post Types of dementia appeared first on Dementia UK.

What is autism?

Autism is a lifelong difference in how a person experiences and interacts with the world. It can influence how someone thinks, feels, communicates, builds relationships, adapts to change and responds to their surroundings.

Autism is not a learning disability, although some autistic people may also have a learning disability.

Communication styles and preferences

Many autistic people prefer communication that is clear, precise and direct. Some may be non-speaking, non-verbal or prefer to communicate in other ways such as writing or using signs or pictures.

Relationships and social situations

Social situations can sometimes feel confusing, overwhelming or tiring for autistic people. This could be because of difficulties with reading social cues, interpreting unspoken rules or processing lots of information at once. Some people may need more time alone, or space to recharge after social interactions.

Routines

Many autistic people value routines, clear plans and predictable environments. Change can be stressful or difficult. Even small changes, like moving mealtimes or rearranging furniture, could have a big impact.

Sensory experiences

Bright lights, loud sounds, strong smells, certain textures or changes in temperature can feel overwhelming or even painful for autistic people. This can affect how someone feels and responds to sensory stimulation.

What is dementia?

Dementia is an umbrella term for a range of progressive conditions that affect the brain. There are many different types; the most common are Alzheimer’s disease, vascular dementia, Lewy body dementia, frontotemporal dementia and mixed dementia.

Each type of dementia stops a person’s brain cells (neurones) working properly in specific areas. Common symptoms include difficulties with memory, confusion and problems with speech and understanding that get worse over time.

Dementia is most common in people over the age of 65, but it can also affect younger people. This is known as ‘young onset dementia’.

Is there a link between autism and dementia?

As with non-autistic people, some autistic people will develop dementia. Both conditions can affect similar areas, such as communication, decision-making and behaviour.

It is not currently known whether autistic people are at greater risk of dementia. Some studies have suggested that autistic people are more likely to be diagnosed with dementia than non-autistic people, while others have found no difference.

High-functioning autism and dementia

Being described as having ‘high-functioning autism’ does not mean the person does not experience challenges or need support related to their autism. It may simply mean that they are able to ‘mask’ or ‘camouflage’ their autism traits so effectively that their differences and difficulties go unnoticed.

There is currently no evidence that autistic people who are described as ‘high functioning’ are any more or less likely to develop dementia than non-autistic people, or that their dementia symptoms are any more or less challenging.

Autism and dementia symptoms

Autism and dementia can both affect similar areas, such as communication, decision-making and behaviour. This can make it hard to tell whether symptoms and changes are due to autism, dementia or both.

For example:

• An autistic person might already find words or communication challenging, so new language difficulties could be missed
• If someone masks their autistic traits, dementia may make this harder, revealing behaviours that seem new or unexpected
• Difficulties with changes in routine, emotional responses or social understanding might be wrongly attributed to autism, when they could be signs of dementia

Every person is different, so how symptoms present and develop will vary. It is important to know what is typical for the autistic person, and to seek help if something seems different or unusual.

Unlike autism, which is a lifelong difference in how someone experiences the world around them, dementia is progressive and always gets worse over time.

Diagnosing dementia in an autistic person

If you notice any changes in yourself or the person you support or care for, it is important to book an appointment with a GP. These changes might include:

• New or worsening memory problems, such as forgetting events or repeating questions
• Difficulties with concentration, problem-solving or decision-making
• Struggling more than usual with communication, for example finding the right words or following conversations
• Changes in mood, such as becoming more anxious, withdrawn or irritable
• Behaving in ways that are unusual or out of character
• Needing more help with daily tasks like cooking, shopping or getting dressed

Symptoms like these do not necessarily mean a person has dementia – they could be caused by stress, burnout, infection, medication side effects or another health issue. However, it is important to seek help if you are concerned.

Diagnosing dementia in autistic people can be complex. Traditional memory tests are not suitable for everyone and there are no specific tests for diagnosing dementia in autistic people. A thorough and sensitive assessment is important and should include input from people who know the person well and, if possible, professionals who have a good understanding of both autism and dementia.

What to expect at the GP

At the appointment, the GP should ask the person about:

• the problems they are having
• when they started, and if they started suddenly or gradually
• how they affect the person’s everyday life
• whether there is any family history of dementia

The GP should carry out some basic memory tests and a physical examination, and should also arrange blood and urine tests to rule out other possible causes of the symptoms.

To help your GP, you can:

• Write down any changes or concerns beforehand
• Bring your NHS health passport, if you have one, to your appointment: this will help the GP understand your needs better, especially if communication is difficult or you are in a new environment
• Bring someone who knows you well to your appointment to help with communication and explaining the symptoms that are causing concern
• Take notes, or ask the person you are with to take notes, or ask for a written summary

If, after an initial assessment, the GP believes the symptoms may be caused by dementia, they should make a referral to a memory clinic for more detailed tests.

Autistic people can request reasonable adjustments to make healthcare appointments easier and more accessible, such as having longer GP appointments or seeing a health professional with training in autism-informed care.

If you experience any difficulties requesting reasonable adjustments, you can contact Patient Advice and Liaison Service (PALS): a free service to help you resolve concerns about your NHS treatment. Your GP surgery can provide details. If you prefer, you can contact an independent advocacy organisation like VoiceAbility.

Living with autism and dementia

The right treatment, support and coping strategies may help to manage the symptoms of dementia in an autistic person and make daily life easier. However, there is no one-size-fits-all approach to supporting someone with dementia, so it may involve some trial and error. Additionally, the person’s support needs and preferences may change as their dementia progresses.

Wherever possible, include the person in decisions about their care and support.

These strategies might help:

Use clear and direct communication

Using simple language, gestures, written notes or visual aids (such as pictures, symbols or colour-coded schedules) can make things easier to understand. Our tips for communicating with a person with dementia may be useful.

Keep routines predictable

Many autistic people and those with dementia find comfort and stability in routine. Try to keep daily activities, surroundings and people as consistent as possible.

Create a calm, sensory-friendly environment

Autism and dementia can both affect how someone experiences sound, light, textures and other sensory input. Adapt the environment to the person’s preferences where possible. This could include using soft lighting, offering quiet spaces and making sure clothing feels comfortable. Read our advice on making the home safe and comfortable for a person with dementia.

Support the person’s emotional wellbeing

Many autistic people experience anxiety, for example in social situations or overstimulating environments. Dementia may also increase a person’s anxiety, leading to emotional responses like frustration or withdrawal. Being calm, patient and reassuring may help to reduce distress. Activities like listening to music, engaging with nature or taking part in hobbies can help provide calm, purpose and a sense of enjoyment.

Notice changes in behaviour or needs

It may be hard for the person to explain or show how they feel. Small changes in mood, appetite, sleep or behaviour could indicate discomfort, pain or distress. Knowing what is usual for the person makes it easier to spot when something is wrong.

Involve people who know the person well

Family, friends and long-term carers can provide support for the person’s preferences, routines and behaviours. Trusted people and familiar faces are especially important as dementia progresses.

Create a personal profile document such as a ‘life story’

This outlines the person’s history, likes and dislikes, routines and needs, and will help health and social care professionals understand them better. Read our advice on creating a life story, which includes a template.

Find out about financial benefits and support

Autistic people and those with dementia may qualify for disability benefits such as Attendance Allowance or Personal Independence Payment (PIP), which could help with the additional costs of living with a disability. Read our advice on financial and legal sources of support for a person with dementia.

Start planning for the future

This is known as ‘advance care planning’ and ensures the person’s views and preferences – for example, their wishes around future care – are understood and recorded. It means any decisions can be taken in their best interests if they cannot make these decisions or express their wishes themselves.

Connect with people in similar situations

Support groups, peer networks and online communities for autistic people and people with dementia can provide opportunities to share experiences, advice and encouragement. You can often find local listings on noticeboards at your library, GP surgery, community centre or places of worship.

 Sources of support

To speak to a specialist Admiral Nurse about autism and dementia or any other aspect of dementia, please call our free Helpline on 0800 888 6678, email helpline@dementiauk.org or book an online or phone appointment.

You may also find these resources useful:

• Understanding autism and dementia
  A guide for autistic people, their families and anyone who supports them
• Advance care planning (including template)
• Attendance Allowance
• Financial and legal sources of support
• Getting a diagnosis of dementia
• Getting the best out of GP and other health appointments
• Learning disabilities and dementia
• Mental capacity and decision-making
• Types of dementia
• What is young onset dementia?

Autistica resources

Autistica is a research and campaigning charity that funds and shapes autism research and policy. Its mission is to create high quality evidence and make breakthroughs that enable autistic people to live happier, healthier and longer lives.

• Dementia UK and Autistica are collaborating to raise awareness of dementia and autism and provide information and support for autistic people living with dementia, those who care for them, and health and social care professionals.
• Tips Hub: a mobile app with autism tips and resources to make everyday life easier
• Molehill Mountain: a mobile app to help autistic people understand and self-manage anxiety

Other resources

• Carer’s Allowance
• Care needs assessment
• Citizens Advice
  Free, confidential advice on money, benefits, housing, legal rights and more
• Find local authority Adult Social Care Services
  For help with arranging care needs assessments, support for daily living and access to community services
• NHS health passport
• Patient Liaison and Advice Service (PALS)
  Free, confidential advice, support and information on NHS health matters
• VoiceAbility
  Advocacy around health, care and wellbeing

Recent studies on autism and dementia

In recent years there has been a lot of research into possible links between autism and dementia. Some studies have suggested that dementia is more prevalent in autistic people, particularly in mid-life. This may be because autistic people are at greater risk of other factors that may increase the risk of developing dementia, for example depression and social isolation.

However, other studies have found that rates of dementia in autistic people are no higher than in non-autistic people.

More research is needed to establish whether there is a link between autism and dementia.

Autism and dementia webinar

The webinar focuses on the care needs of autistic people living with dementia, and how the interaction between autism and dementia calls for personalised care and support.

Autistic people living with dementia often face distinct challenges in accessing appropriate care and support. These challenges may stem from a lack of understanding about how autism and dementia interact, and how best to adapt care to meet individual needs.

• How can health and care professionals identify signs of dementia in autistic people, and ensure these are not overlooked or misinterpreted?
• How can care and support be adapted to effectively meet the unique needs of autistic people living with dementia?
• How can organisations work to improve awareness and develop practical guidance for autistic people with dementia, their families, and professionals?

This webinar features Dr Madeleine Walpert, Deputy Head of Research and Publications at Dementia UK; Dr Gavin Stewart, Senior Postdoctoral Research Fellow, King’s College London; and Dr Chris Knifton, Admiral Nurse and Associate Professor of Neurocognitive and Neurodevelopmental Education, De Montfort University.

The post Autism and dementia appeared first on Dementia UK.

Losing gran

In the first weeks after losing my gran, I would wake up and feel the absence before I even opened my eyes. Grief often feels stuck — your body feels heavy while your mind races with memories and emotions. At first, I ran simply to get outside. To move. To breathe. But quickly, running became something more. When I put on my trainers, I wasn’t running for fitness or training; it was a way to release tension and ease the weight in my chest. The grief was still there, but running gave me an outlet to pour it into.

Gran loved being outdoors

My gran loved being outdoors and many of our happiest memories were made outside together. Running has become my way of keeping that connection alive. As the weeks passed, I started to notice moments where my gran felt close. On a sunny stretch of road, or a run through the park, I would remember the walks we used to take. Each mile became a way of carrying her with me. Sometimes the miles brought tears. Other times, they brought laughter, as memories of my gran surfaced mid-run. Both felt like healing.

Signing up for London Landmarks Half Marathon

Signing up for a half marathon with Dementia UK felt like a way to honour my gran and transform pain into purpose. I couldn’t change what had happened, but I could channel my energy into something positive: raising awareness and funds, and making a difference for other families affected by dementia. That sense of purpose has been powerful. It repurposed running from a coping mechanism to a mission.

Even now, there are runs where the grief catches me off guard. A certain song on my playlist, or a quiet stretch of road, and suddenly it’s there again. The difference is I’ve stopped resisting it. Grief doesn’t vanish, but through running, I’ve learned it can be carried. Sometimes heavily, sometimes lightly, but always moving.

The hardest part of grief

The hardest part of grief is the feeling of helplessness. Running gives me back a sense of momentum. Over time, it has given me more than release — it’s given me hope. Hope that I can keep going, even with loss. Hope that joy can exist alongside sadness. Every mile feels like a reminder that grief doesn’t have to hold me still. It can move with me, and even teach me strength I didn’t know I had.

If you’re grieving, you don’t need to run a half marathon. But finding movement — whether through a walk, a swim or a cycle — could help. It doesn’t take away the grief, but it gives it space to breathe. For me, running has been a way to carry my gran’s memory forward. Each step honours her, and each finish line reminds me that love doesn’t end — it just finds new ways to keep going.

The post Running through grief – my journey after losing my gran appeared first on Dementia UK.

Research has shown that there is a link between high cholesterol and an increased risk of developing dementia. On this page, our specialist Admiral Nurses explain what cholesterol is, the link with dementia, and how to lower your cholesterol levels.

What is cholesterol?

Cholesterol is a waxy substance found within the body. It is needed to build cells and produce vitamins, but if your cholesterol levels are too high, it can cause health problems.

The liver produces all the cholesterol your body needs. However, it can also come from:

• meat
• dairy products
• saturated and trans fats, which are found in foods like fatty meat, butter, cheese, fried foods and baked foods such as cakes, pastry and biscuits
• certain oils used in baking, such as palm oil and coconut oil

Types of cholesterol

There are two different types of cholesterol: high-density lipoprotein (HDL) and low-density lipoprotein (LDL), sometimes referred to as non-HDL cholesterol.

LDL/non-HDL cholesterol

LDL/non-HDL cholesterol is often referred to as ‘bad’ cholesterol because it can cause fatty build-ups in the arteries. These thick, hard accumulations of cholesterol narrow the arteries and increase the risk of heart attacks, stroke and other heart problems.

On this page, where we use the term ‘high cholesterol’, we are referring to high levels of ‘bad’ LDL cholesterol.

HDL cholesterol

HDL cholesterol is sometimes referred to as ‘good’ cholesterol, because at healthy levels, it may help protect against heart problems such as heart attacks or strokes.

The role of HDL in the body is to carry LDL away from the heart and back to the liver, where it can be broken down. However, HDL can only carry a small amount of LDL and cannot fully eliminate it from the body.

Normal vs high cholesterol

‘High cholesterol’ means having too much LDL/non-HDL cholesterol in the blood.

Your target cholesterol level will depend on many factors such as your age, risk of cardiovascular disease and any pre-existing health conditions. However, as a guide, a healthy level of LDL/non-HDL cholesterol is below 4mmol/L.

Who is at risk of high cholesterol?

High cholesterol levels are more common in people who eat a diet that is high in fat, smoke, drink too much alcohol, are overweight and/or lack physical activity.

You are also more likely to have high cholesterol if you are over 50, male, a woman who has been through the menopause, or of a South Asian or sub-Saharan African background.

High cholesterol can run in families.

How high cholesterol can affect your brain

High cholesterol can cause a build-up of two proteins – amyloid and tau – within the brain. These proteins create ‘plaques and tangles’ in the brain and are linked to developing Alzheimer’s disease.

High cholesterol can also cause damage to and blockages in the blood vessels which carry blood and oxygen to the brain. When the flow of blood and oxygen to the brain is interrupted, it may lead to vascular dementia.

The impact of high cholesterol on memory and cognition

High cholesterol is linked with an increased risk of dementia, resulting in problems with memory and cognition (thinking). These could include:

• difficulties with memory, particularly short-term memory – including forgetting names, places and dates; losing or misplacing items; and forgetting recent occasions and conversations
• difficulties with problem-solving, judgement and decision-making
• communication problems
• poor concentration and attention span
• changes in mood, behaviour and personality

How high cholesterol can affect your body

As well as leading to a build-up of proteins in the brain, high cholesterol levels can lead to heart problems and stroke as a result of blockages in the blood vessels throughout the body.

The link between cholesterol and dementia

Vascular dementia risk and cholesterol

High cholesterol can cause blockages in the blood vessels. This can affect the blood supply to the brain, increasing the risk of vascular dementia. It can also increase the risk of stroke, and almost one in three people who have a stroke go on to develop dementia.

Alzheimer’s disease risk and cholesterol

High levels of cholesterol in the brain can lead to a build-up of proteins that form plaques and tangles. These are strongly linked to developing Alzheimer’s disease.

Other types of dementia

There is some evidence that high cholesterol is associated with an increased risk of other types of dementia, including Lewy body dementia and frontotemporal dementia. While more research is needed into the link between high cholesterol and rarer forms of dementia, the strong association between high cholesterol and dementia overall means it is important to try to keep your cholesterol at a healthy level.

Cholesterol medication and dementia

Statins are a type of medication used to reduce cholesterol levels. Studies have shown that compared to people with untreated high cholesterol, people who take statins are about 30% less likely to develop Alzheimer’s disease and 7% less likely to develop vascular dementia. Overall, people with high cholesterol who take statins are around 20% less likely to develop any form of dementia than those with untreated high cholesterol.

Find out more about statins and their link to dementia.

Lowering your cholesterol levels to reduce your dementia risk

Research has suggested that reducing your cholesterol levels could decrease the likelihood of developing dementia.

Diet

Making changes to your diet could help to lower your cholesterol and therefore potentially reduce your risk of dementia – particularly cutting down on fatty foods that contain saturated fats. You will be able to see the type of fat and the amount a food contains on nutrition labels, which often use a ‘traffic light’ system where red indicates the food is high in fat, yellow is medium, and green is low.

Foods to avoid include:

• fatty meats like sausages, bacon, ham and meat pies
• cream and hard cheese, such as cheddar
• biscuits and cakes
• butter, lard and ghee
• food that is made with coconut or palm oil

Try to eat more of these foods:

• fruit and vegetables
• nuts and seeds
• oily fish
• wholewheat pasta, wholegrain bread and brown rice
• olive and rapeseed oils

Exercise

You should aim to do around two and a half hours of exercise a week. This can be broken down into small chunks. Any form of physical activity is helpful, as long as it increases your heart rate, for example:

• walking
• jogging
• swimming
• cycling
• fitness or dance classes
• sports like football, netball or tennis

Everyday physical activity also counts, such as housework, gardening, dog walking and washing the car.

How we can support you

To speak to a dementia specialist Admiral Nurse about cholesterol or any other aspect of dementia, please call our free Dementia Helpline on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm, every day except 25th December) or email helpline@dementiauk.org. Alternatively, you can pre-book a phone or video call with an Admiral Nurse.

The post The link between cholesterol and dementia appeared first on Dementia UK.

Caring for a person with dementia affects the whole family and bring new challenges every day. Carers often tell us that they struggle to find support and are sometimes left feeling exhausted, overwhelmed and alone. But many also share moments of joy and closeness with the person they care for, and make new memories together.

Understanding the changes in the person with dementia and making sure you receive the support you need to care for them can help you stay physically and mentally well, maintain your relationship with them and find time for yourself outside your caring role.

Family carers and our dementia specialist Admiral Nurses share their personal insight into what it’s like to care for someone living with dementia, and their tips for coping.

Understanding the different types of dementia

There are many types of dementia, each with its own symptoms. The most common forms are:

• Alzheimer’s disease: the most common type of dementia in the UK. It typically starts with memory problems
• Vascular dementia: this is usually linked to problems with blood flow to the brain and can cause difficulties with concentration, planning and decision-making
• Frontotemporal dementia: often diagnosed at a younger age, this type initially mainly affects behaviour and language
• Lewy body dementia: this can cause visual hallucinations, movement difficulties and disrupted sleep
• Mixed dementia: a combination of two or more types, most commonly Alzheimer’s disease and vascular dementia

It’s important to note that everyone will have their own unique experience of dementia, with their own strengths and challenges. And as it progresses, people are likely to develop a wider range of symptoms, with more overlap between the different types.

What are the daily challenges of life with dementia?

Everyone’s journey with dementia is different. While it’s most commonly associated with memory loss, the symptoms are wide-ranging. Understanding how it affects the person you are caring can help you provide the right support and develop strategies to cope with the changes.

These are some of the symptoms you might see in a person with dementia.

Difficulties with memory

Memory problems – particularly with short-term memory – are common in people with dementia, especially those with Alzheimer’s disease. The person might forget recent events, repeat themselves in conversations, forget names and places and misplace items or put them in the wrong place.

Changes in behaviour and cognition

A person with dementia might struggle with concentration, attention, problem-solving and decision-making. They may show changes in behaviour, for example obsessive, compulsive or uninhibited behaviour. Communication difficulties are common. Many people also experience sundowning: a state of intense confusion and anxiety that typically occurs around dusk and often causes a strong sense of being in the wrong place.

“In recent years, Dad has been overcome with confusion once the sun goes down – known as ‘sundowning’. Despite the fact it’s pitch-black outside, he believes that it’s daytime, so it’s very hard to get him to sleep at night. As a result, I’ve had to adjust my own sleeping patterns, often staying awake for most of the night and napping throughout the day.”

 – Kaur, who cares for her dad, Mohinder

Changes in personality

People with dementia may experience changes in personality, which can be upsetting for their carers. They might lack empathy, lose motivation and interest in their daily activities and the people around them, or become uncharacteristically irritable and aggressive.

“Carol became aggressive, which was distressing for both me and our children. She would verbally abuse me, and it felt like whatever I did was wrong. But Admiral Nurse Katie really listened to me and reassured me that I wasn’t doing anything wrong, that Carol’s behaviour was just part of the disease.”

 – Russell, who cares for his wife, Carol

Changes in emotions and mood

People with dementia may experience depression, anxiety and difficulty managing their emotions. This may be caused by dementia itself, or the impact of its symptoms on their daily life and the plans they had for the future. It might cause them to withdraw from other people.

“Sometimes I would have to remind Gopala to take a shower, or to brush his teeth. This would lead him to become incredibly frustrated. He would get angry at me, which was so out of character for him. However, I knew deep down he was just angry at his condition and his inability to do things he’d previously done with ease.”

 – Pratibha, who cared for her husband, Gopala

Dementia and sensory issues

Dementia can affect the senses, including how a person perceives things visually and responds to sensations like sound, touch and smell. For example, a reflection in the mirror might appear to be a person or animal in the home, or loud noise may make the person feel overwhelmed and distressed.

Hallucinations

In some forms of dementia hallucinations are common, where the person experiences something that is not really happening. They might hear voices, see things that aren’t there or feel physical sensations that are not real, for example feeling bugs crawling on their skin.

Delusions

Some people with dementia experience delusions: false beliefs that feel completely real, for example believing someone is trying to steal from them or thinking their partner is being unfaithful.

Physical changes

Dementia can lead to physical changes. In some forms of dementia, these can occur in the early stages: for example, people with Lewy body dementia may experience slowed movement, difficulty walking, tremors and falls.

As dementia progresses, a person may develop more physical symptoms, such as:

• mobility problems and falls
• frailty
• incontinence
• difficulty swallowing

How carers experience the effects of dementia

Caring for someone with dementia can be very challenging. It can be hard to see the changes in someone you love, and many carers and family members experience grief for the person even while they are still alive. Relationships may also change – for example, the person’s partner may feel more like a carer, and parent-child relationships may reverse.

Guilt is a common emotion. Carers may feel guilty if they feel they are not doing enough, or if they are sometimes frustrated or resentful of their caring duties.

As a person’s dementia progresses, the impact on those around them is likely to increase. For example, their carer may have to reduce their hours at work or stop working completely because of their caring responsibilities. Or their caring duties may affect their physical and mental health.

It’s very important to look after yourself if you care for someone with dementia so you don’t reach the point of burnout. Our advice on looking after yourself as a carer has tips to help you take care of yourself.

Bear in mind that while the caring role can be very difficult, you can still have a close and meaningful relationship with the person with dementia, even if it looks different from how it was before. For some people, a diagnosis of dementia can open up new opportunities – for example, to try a new hobby together, travel, or spend more time together as a family.

Even as dementia progresses, there can be moments of joy and connection that sustain you through the harder times. There may be opportunities to make new memories, even if the person with dementia can’t retain those memories themselves. Some carers also feel a sense of pride and fulfilment from being able to care for their loved one.

“I didn’t hesitate to fill the role of Nan’s primary carer. All of my life she had been there for me. Now it was my turn to be there for her. And even though the juggle of caring, full-time work and parenting was a lot, I never regretted this for a second.”

 – Michaela, who cared for her grandmother

Caring for someone with young onset dementia

Caring for a person with young onset dementia (where symptoms develop before the age of 65) can be particularly difficult. You may face additional challenges such as juggling work and caring, looking after children or teenagers, and changes in your financial situation. Children may also find themselves in the role of young carer if a parent has young onset dementia.

Our Admiral Nurses are here to support you as the carer of someone with young onset dementia, and we also offer specialist support to children and young people. Please contact our Helpline if you need to talk to someone.

Carers’ perspectives on dementia

“Caring for a loved one with dementia is an emotional journey filled with moments of love, frustration, and intense guilt. I think it stems from love, because you want to do everything you possibly can. It doesn’t matter how much love, care and support you provide, you will always have feelings of not doing enough.”

 – Ricky, whose gran had Alzheimer’s disease

“Mum will occasionally call me by her brother’s or my dad’s name, but we really get each other. She has good days and not so good days, but it’s impossible to be around her and not feel her passion for life.”

 – Will, whose mum Ronnie has young onset dementia

“While Dawnie’s final years were incredibly hard to navigate, we were able to create memories that I never thought we would be able to. We took her on a helicopter flight. We did a birds of prey experience. Went on a holiday to Devon. Visited Cadbury World. And had many outings for coffee and cake – her favourite. This meant the world.”

 – Rosie, who cared for her mum, Dawnie

“Living with dementia is hard. Your whole life changes. Relationship dynamics change. I’m Andy’s carer now – but I’m also still his partner. We go swimming in our local lake and have signed up for marathons. We have learnt we can live well with dementia if we make adjustments. It’s part of our life now.”

 – Christine, whose partner Andy has young onset dementia  

How to cope with dementia as a carer

Dementia is a complex and challenging condition, whether you are living with it yourself or supporting someone with the diagnosis, but there are strategies to help you cope. Here are some tips.

• Be patient and understanding: try to see things from the perspective of the person with dementia. Focus on their feelings and what they can still do, rather than what they can’t
• Provide reassurance: if the person becomes distressed, stay calm, offer comfort and try to identify what’s making them upset – such as unmet needs or changes in routine
• Share the load: ask for help from family, friends or community services. Taking regular breaks is important for your own wellbeing
• Join a support group: talking to others who understand can provide emotional support and practical tips
• Try to respond to the person as they are now, rather than as they used to be
• If the person’s behaviour is challenging, remind yourself that these changes are the result of their dementia and not a reflection of how they feel about you, or anything you have done
• Look after yourself: caring for someone with dementia can be challenging. Make sure you take time for yourself and maintain a healthy lifestyle with a balanced diet and regular physical activity
• Seek professional support if you need it, for example by speaking to an Admiral Nurse on Dementia UK’s Helpline or in a virtual clinic appointment, or by contacting your GP
• Take things at your own pace. You are in a role you never expected and haven’t been trained for, so it’s natural to feel overwhelmed at times. No one expects you to know everything, or do everything perfectly

Practical tips for caring

Try to pre-empt the person’s needs: offer drinks, snacks or help with personal care at regular intervals to prevent distress.

• Communicate clearly: give information in small, easy-to-understand chunks and allow plenty of time for tasks
• Avoid triggers: learn about the person’s life history to identify and avoid things that might upset them
• Create a safe environment: make changes at home to reduce risks, such as removing trip hazards and installing handrails
• Support the person to live as healthily as possible, for example by eating and drinking well, taking medication as prescribed and attending medical appointments (eg health reviews, sight and hearing tests and vaccinations) – taking care of their overall health may make their symptoms more manageable and therefore avoid some of the challenges of caring
• Be aware of changes in the person’s symptoms, behaviour and health and seek medical advice if you are concerned. Changes may be due to treatable issues like pain or an infection, and addressing these could help to avoid situations like hospital admissions

How do I tell people I am caring for someone with dementia?

You might be reluctant to tell people that you are a carer – perhaps because you feel you are simply doing what is expected in your relationship, or because you feel you should be able to manage without support. But it’s important that the people around you understand that you are caring for someone with dementia so they can offer support.

When to tell others

• Choose your own place and time – make sure you feel comfortable before you start a conversation
• Think about who you’ll tell – many people find it helpful to talk to family or close friends first
• Think about what you want to say; making notes could help

How to tell people

• Be honest and open: share how you’re feeling and how your caring role is affecting you
• Let them know if you want practical support or just someone to listen
• Make sure you ask people for the support you need, not what they think you need – caring for someone with dementia affects everyone differently
• Use clear, simple language: explain what dementia is and how it’s affecting the person with the diagnosis and you as a carer
• It might be helpful to point people towards the information on Dementia UK’s website so they can learn more

Recognising when extra support is needed

As dementia progresses, the person’s needs will increase and they will need more support. You can ask your local Social Services for a care needs assessment, which will help identify what support the person needs and any financial support that is available. You are also entitled to a carer’s assessment from Social Services which will look at what support you need in your caring role.

As a carer, accepting that a person needs additional support – whether from home carers or in a care home – can be difficult. It’s natural to feel like you should be able to cope, or that you’re letting the person down. But the right support can often free up time that was taken up with caring tasks, so you and the person with dementia can enjoy quality time and connection together.

“Even though I have now found the right care home for Mum, the feelings of guilt don’t go away but I try to consider what I would say to someone else in the same situation as me. Seeing that Mum is content and settled in the care home helps hugely and gives me some peace.”

 – Penny, whose mum lives with dementia

Where to find help

If you are caring for someone with dementia, it’s essential to have support. This could come from:

• other family members and friends
• your GP
• a counsellor or therapist – your GP can refer you, or you can refer yourself for talking therapy
• support groups, online or in person

Our Admiral Nurses are also here to answer any questions about dementia and offer practical advice and emotional support – you can contact our Helpline or book a video or phone appointment.

Dementia UK support resources

• The emotional impact of a dementia diagnosis
• How dementia can affect relationships and roles
• How we can support you
• Looking after yourself as a carer
• Signs and symptoms of dementia
• Stages of dementia
• Sources of support: practicalities

The post What is it like to care for someone with dementia? appeared first on Dementia UK.

Statins are a type of medication prescribed to reduce cholesterol and prevent heart disease and related complications, such as heart attacks and strokes.

While some people are concerned that statins could cause dementia, research shows that for people with high cholesterol or heart disease, taking a prescribed statin may prevent damage to the brain and blood vessels and reduce the risk of dementia.

Our dementia specialist Admiral Nurses explain what statins are, what they are used for and how they might help to reduce the risk of dementia.

What is cholesterol?

Cholesterol is a fatty substance that is made by the body and is also in some of the foods we eat. We all need cholesterol to keep our cells healthy, but too much of the wrong type can cause health problems.

There are two types of cholesterol:

• low-density lipoprotein (LDL) or non-high-density lipoprotein (non-HDL): this is often known as ‘bad cholesterol’ as it leads to a build-up of fat in the arteries, which can be dangerous
• high-density lipoprotein (HDL): this is often known as ‘good’ cholesterol as it removes ‘bad’ cholesterol from the body

On this page, when we use the term ‘high cholesterol’, we are referring to ‘bad’ LDL cholesterol.

What are statins?

Statins are a group of medications used to help lower cholesterol levels. They come as tablets to be taken once a day.

How do statins affect the body and brain?

High levels of cholesterol can cause fat to build up in the arteries. This narrows the arteries, which can interrupt the blood supply to the body and brain and lead to health problems like heart disease and strokes. These fatty deposits can also break off and cause clots in the blood vessels. This can happen anywhere in the body, including the brain.

Statins work by blocking a specific enzyme which the liver uses to produce cholesterol, reducing the levels in the body. They can’t remove any existing fatty build-up in the arteries, but they can stop it getting worse.

Why are statins prescribed?

Statins are prescribed to reduce cholesterol levels and help to prevent further damage to the arteries.

What conditions are statins prescribed for?

Statins may be prescribed for people who have high cholesterol or cardiovascular disease (CVD). They may also be prescribed for people who are at risk of developing CVD within the next 10 years. This risk is based on the person’s personal and family history.

CVD includes:

• coronary heart disease: a restriction in blood supply to the heart
• angina: chest pain caused by reduced blood flow to the heart
• heart attacks: when the supply of blood to the heart is suddenly blocked
• stroke: this happens when the supply of blood to the brain becomes blocked
• transient ischaemic episodes (TIAs): ‘mini strokes’

Cholesterol and dementia

Research has shown that people who have high cholesterol between the ages of 40 and 60 are at an increased risk of developing dementia.

High cholesterol can lead to a build-up of proteins in the brain which form ‘plaques’ and ‘tangles’ that are linked to Alzheimer’s disease.

The blockages in arteries caused by high cholesterol levels can also lead to conditions like high blood pressure and stroke, which can increase the risk of vascular dementia.

Do statins increase the risk of developing dementia?

People sometimes worry that taking statins could increase the risk of developing dementia. This could be because a small number of people develop some memory loss and confusion when they start taking statins, which they may attribute to dementia.

However, these symptoms are side effects of the medication and are reversed if the person stops taking statins, unlike the symptoms of dementia, which cannot be reversed and always get worse over time.

Evidence of statins lowering dementia risk

Studies have shown that people who are taking appropriately prescribed statins are around 20% less likely to develop all forms of dementia than those who aren’t taking statins.

However, taking statins where there is no reason to do so has no benefit on memory or thinking skills.

Statins and Alzheimer’s disease risk

Studies have shown statins reduce the risk of Alzheimer’s disease by around 30% in people with high cholesterol, CVD or a high risk of CVD, compared to those who aren’t taking statins.

Statins and vascular dementia risk

People who are taking appropriately prescribed statins are around 7% less likely to develop vascular dementia.

Ongoing research

Research into the impact of statins on dementia is ongoing. There is evidence that if someone is taking statins for high cholesterol, taking them as prescribed on a long-term basis could help. However, taking statins is not thought to reduce the risk of dementia in people who have healthy cholesterol levels.

More research is needed into how statins could affect the chances of developing dementia.

Questions to ask your healthcare provider before starting statins

There are a range of questions you can ask before starting to take statins, including:

• What are the potential side effects?
• What should I do if I experience side effects?
• Could these interact with any existing medications I am taking?
• What other changes should I make while taking them?
• Are there any alternatives to taking statins?
• Lifestyle changes like eating a healthy diet, getting regular exercise, stopping smoking and keeping alcohol consumption within recommended limits can also reduce cholesterol levels

How we can support you

To speak to a dementia specialist Admiral Nurse about statins or any other aspect of dementia, please call our free Dementia Helpline on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm, every day except 25th December) or email helpline@dementiauk.org. Alternatively, you can pre-book a phone or video call with an Admiral Nurse.

The post Understanding statins and dementia appeared first on Dementia UK.

People affected by dementia, alongside our specialist Admiral Nurses, share their personal insight into what it’s like to live with the condition. 

Everyone’s journey is unique

Dementia brings both challenges and opportunities. People living with dementia can easily become isolated and overwhelmed by feelings of despair. But many people can also learn new skills, meet new people and have fun, especially if they are well supported.  

“The overwhelming response to dementia tends to be negativity. While I understand this perspective, it overlooks the fact that I am still here, and there is so much I can do. I now dedicate a significant part of my life to things that bring me joy and meaning. I try to live my best life.”

–  Gail, who has young onset dementia

“My diagnosis of dementia did not mean the end. I’ve started new hobbies, like painting, and learnt new things about myself. I’ve put my energies into advocating for people who have dementia. For me, dementia has been the start of a new chapter, and it’s not a bad chapter.”

– George, who has mixed dementia

Understanding the different types of dementia

There are many types of dementia, each with its own symptoms. The most common forms are: 

• Alzheimer’s disease 
• vascular dementia 
• frontotemporal dementia 
• Lewy body dementia 
• mixed dementia: a combination of two or more types, most commonly Alzheimer’s disease and vascular dementia 

Over 70,000 people in the UK live with young onset dementia: any form of dementia that develops before the age of 65. 

What are the daily challenges of life with dementia?

Everyone will experience dementia in their own way. While it is often associated with memory loss, there is a wide range of symptoms, including difficulties with thinking and communication, and changes in behaviour, mood and personality. 

Difficulty with memory

Difficulties with memory are common in dementia, particularly Alzheimer’s disease. However, in the initial stages, memory loss mostly applies to difficulty forming new short-term memories. Long-term memories – for example, of the person’s younger days – often remain intact. 

A person with dementia might:  

• struggle to remember recent events 
• forget recent conversations, often leading to the person repeating themselves 
• forget names and faces 
• get lost, even in familiar places 
• misplace items or put them in the wrong place 
• forget appointments, events and occasions 

“Do not ask us if we remember something and get annoyed when we don’t – there is nothing we would like better than to remember. But keep in mind that our failing memory does not necessarily mean we are unable to think logically. We may no longer know instinctively what day it is, or what we had for breakfast, but some of us can still remember faces from long ago and retain our vocabularies.”

 – Peter, who lives with Alzheimer’s disease

Behavioural and cognitive changes

Changes in behaviour and cognition (thinking) are common in people with dementia and can make everyday life more difficult. These changes may include:

• increasing difficulty with daily tasks, for example finding it hard to plan, organise, solve problems or make decisions
• finding it hard to concentrate and pay attention
• restlessness, obsessive or compulsive behaviour, eg making repetitive movements, pacing, frequently checking doors and windows
• misunderstanding what is seen, for example thinking a reflection is a stranger in the home
• difficulty communicating
• disturbed sleep
• changes in visual and spatial awareness, which could lead to falls, impaired driving ability etc
• sundowning: a state of intense confusion and anxiety that typically occurs around dusk and often causes a strong sense of being in the wrong place
• increasing difficulty with mobility
• problems with eating and drinking, including recognising hunger/thirst, preparing food and eating independently
• incontinence (usually in the later stages)

Changes in personality

People with dementia may experience changes in personality, which can be upsetting and frightening for them and those around them. These changes might include:

• loss of empathy
• loss of motivation and interest in their daily activities and the people around them
• becoming unusually irritable and aggressive
• uninhibited behaviour, eg staring at people, using inappropriate language, making sexual comments
• neglecting personal hygiene

The impact of dementia on emotions and mood

A diagnosis of dementia, and its increasing impact on everyday life, can trigger a range of emotions. A person with dementia may experience:

• shock – particularly if the diagnosis was unexpected
• relief that they now know what is causing their symptoms
• disbelief – especially in the case of young onset dementia 
• feelings of being overwhelmed
• grief for the person they once were, and the future they were anticipating
• feelings of helplessness/hopelessness
• guilt at the effect dementia might have on their family
• fear about how their condition will progress

People with dementia may also experience mood changes, such as feeling anxious, irritable, depressed or distressed. These may be symptoms of dementia itself, or the result of worrying about what is happening and how it will affect them in the future.

The impact of dementia on mood and emotions can make day-to-day life more challenging. For example, someone who is feeling depressed may withdraw from other people, lose their appetite or find it hard to sleep.

However, many people with dementia continue to live fulfilling lives after their diagnosis. This is particularly true if they have the right support, remain socially active for as long as possible and keep up with their interests and hobbies, or take the opportunity to try new ones.

How dementia might feel emotionally

“When you’re diagnosed with dementia, you can feel so, so alone. What you need is someone to tell you it’s going to be okay. Tell you there’s a whole lot of living to be done.”

 – Sylvia, who lives with Alzheimer’s disease

“When I was first diagnosed with dementia, I felt angry. It didn’t seem fair. But that changed when my wife Christine and I booked an appointment with Admiral Nurse Helen. She explained in really simple terms what dementia was and how it was affecting my brain. Instead of fighting what was happening, I accepted it. Helen gave us the confidence to carry on doing things that we enjoy.”

 – Andy, who has young onset dementia

“I was fed lots of doom and gloom when I was diagnosed. That was until Admiral Nurse Liz arrived, and showed me that there is life after dementia. I feel like dementia has opened a lot of doors and opportunities for me that I wouldn’t have otherwise noticed.”

 – Peter, who has Alzheimer’s disease

Dementia and sensory issues

Dementia can affect the senses, including how a person perceives things visually and responds to sensations like sound, touch and smell. For example:

• A person with dementia might misperceive what they see – a dark rug on the floor might look like a hole, or a reflection in the mirror might appear to be a person or animal in the home
• Loud or sudden noises may cause fear and distress
• Noisy and busy environments might cause overstimulation and make it harder to concentrate on conversations
• Smells might be misinterpreted as something else – for example, the person might think a food smell from the bin is a gas leak
• The person might be more sensitive to touch
• There may be changes in taste, so foods the person has always enjoyed now taste unpleasant

What sensory overload feels like for people with dementia

Sensory overstimulation can be very distressing for a person with dementia, especially if they can’t remove themselves from the situation or communicate how they are feeling. They may show their distress in ways like:

• crying, shouting or swearing
• pacing
• shadowing their carer and not wanting to be left alone
• self-soothing behaviours like fidgeting or rocking
• resisting support, especially with self-care
• trying to leave their home
• becoming verbally or physically aggressive

“I’d always had my own office at work, which suited me, but soon after my diagnosis of Lewy body dementia I got moved into an office with other people and with hardly any natural light and from that point on things just went downhill.”

 – Phil, who retired soon after his young onset dementia diagnosis

What hallucinations and delusions feel like for a person with dementia

Hallucinations in dementia

Some people with dementia have hallucinations, where they experience something that is not really happening, for example:

• hearing voices or sounds (auditory hallucinations)
• seeing things that aren’t there (visual hallucinations), often people or animals – this is more common in people with Lewy body dementia
• feeling physical sensations that are not real, for example feeling bugs crawling on their skin

Hallucinations feel completely real to the person who is experiencing them, and may be annoying, unsettling or frightening.

Delusions in dementia

Delusions are false beliefs and are common in people with dementia. The person is unlikely to be able to think rationally about whether these delusions are true, and trying to provide them with a rational explanation may increase their frustration and distress.

Common delusions include:

• thinking that someone is trying to steal from them 
• thinking that someone is trying to harm them
• believing that their partner is being unfaithful
• thinking they’re living in the past – for example, that they still go to school or work 

Delusions can be very powerful and upsetting, especially if the person believes someone close to them can no longer be trusted.

How do I tell people I have dementia?

Telling others that you have been diagnosed with dementia can feel overwhelming, but sharing your news with people close to you can help them understand what is happening and offer support.

When to tell others

• Choose your own timing: there is no right or wrong time to share your diagnosis, so tell people when you feel ready
• Plan ahead: think about who you want to tell and how you might do it
• Start with those closest to you: many people find it helpful to talk to family or close friends first
• Consider writing things down or rehearsing what you want to say

If you work, it’s a good idea to tell your employer sooner rather than later as you are entitled to reasonable adjustments to help you continue in your job

How to tell people

• Be honest and open: share how you’re feeling and what your diagnosis means for you
• Let people know if you want practical support or just a listening ear
• Use clear, simple language: explain what dementia is and how it might affect you, but don’t feel pressured to provide all the answers
• Share information: consider giving people our leaflets or directing them to our website or other reliable resources so they can learn more
• Let people react in their own way. Some may be shocked, sad, or worried; others may feel relieved to understand what’s been happening

“I speak about my dementia diagnosis very openly. I’m not embarrassed by it. If you break your leg and you need crutches, you’re not ashamed about it. We need to talk about dementia in the same way.”

 – Andy, who lives with young onset dementia

Recognising when extra support is needed

As dementia progresses, the person’s needs will increase and they will need more help with daily life, although with the right support, many people can continue to live safely and independently in their own home for some time.

If you are considering whether extra support is needed, read our information on living alone with dementia, finding care and support at home, and considering a care home.

“For some years, I tried to put off arranging carers for myself. I have always found it much easier to provide care than to accept it. However, as I’m living on my own, it’s a personal hurdle I’ve had to overcome. At the moment, I accept help twice a week.”

 – Julie, who lives alone with dementia

Where to find help

If you are living with dementia, it’s essential to have support. This could come from:

• family members and friends
• your GP
• a counsellor or therapist – your GP can refer you, or you can refer yourself for talking therapy
• support groups, online or in person

Our Admiral Nurses are here to answer any questions about dementia and offer practical advice and emotional support – you can contact our Helpline or book a video or phone appointment.

Sources of support

Dementia UK support resources

• The emotional impact of a dementia diagnosis
• How we can support you
• Signs and symptoms of dementia
• Stages of dementia
• How dementia can affect relationships and roles

The post What is it like to live with dementia? appeared first on Dementia UK.