The Complete Guide To Dementia & Alzheimer’s Care At Home

Understanding Dementia & Alzheimer’s

About dementia

The term ‘dementia’ is often used as an umbrella name for a number of conditions which all involve the impairment of cognitive function. However, while dementia typically conjures a stereotypical image of a forgetful older person, in reality, it can impact a range of ages and lifestyles, and can manifest in a number of ways. 

If you (or a loved one) have recently been diagnosed with a form of dementia, you may be looking to learn as much as you can about the condition in order to better understand what is happening inside the body, and how best to manage it as it progresses. 

What is dementia?

Dementia is a collective term to describe a number of progressive neurological disorders that impair cognitive function beyond what is expected with normal ageing. It can affect a person’s memory, reasoning, and the ability to perform daily activities, and can eventually advance to the level where someone with the condition may struggle to perform basic tasks, and could see changes to their personality. 

According to the Alzheimer’s Society, 900,000 people currently live with dementia in the UK, however this is predicted to rise to 1.6 million by 2040.

What are some of the signs and symptoms of dementia? 

If a person has dementia, some of the neurons in their brain are damaged. This means electrical messages cannot be sent efficiently across those neurons, which can impair some or all functions of the body. 

The effects of dementia are often minor to start with, and may barely be noticeable to the individual themselves or to the people around them. However, over time they can become severe enough to affect day-to-day life. Dementia symptoms will ultimately depend on the parts of the brain being affected, and the nature of the disease causing the dementia, but regardless of the specific combination of symptoms experienced, it can be extremely debilitating and distressing.

Some common signs and symptoms of dementia include: 

• Memory loss: A person with dementia might start to show signs of forgetfulness and lose their memory of recent events, names, where they live, and more. They may also start to misplace items around the house, become disoriented, get lost in familiar places or lose track of time easily.
• Communication issues: Dementia can affect communication and cause a person to struggle with finding the right words and expressing themselves effectively.
• Impaired decision making: Judgement and planning may be affected, making it more difficult to make effective decisions, assess risk, organise things and solve problems.
• Mood and personality changes: Dementia can cause changes in a person’s mood, typically before other symptoms appear. For example, increasing irritability or anger, or making them more anxious or depressed.
• Lack of interest: Those with dementia may start to lose interest in activities they once found enjoyable, such as hobbies or social gatherings.
• Struggles with daily tasks: Everyday tasks like getting washed and dressed or cooking dinner can become much more difficult for someone with dementia.

Some of the above symptoms may appear early, while others will not be noticed until the later stages of dementia. Symptoms tend to become worse over time, and eventually most people who suffer from dementia will require help with their everyday activities.

What causes dementia?

Different types of dementia are caused by different things, but in general dementia is thought to be caused by changes in certain regions of the brain which negatively impact neurons and their connections. It is unclear exactly why this happens to some people but not others. 

The most common type of dementia is Alzheimer’s disease, which is characterised by abnormal protein deposits in the brain. Lewy body dementia is another common type which involves these abnormal protein clumps, however Vascular dementia is thought to be caused by reduced blood flow to the brain, which can sometimes be the result of a stroke. Other causes of dementia include frontotemporal disorders, traumatic brain injuries, certain infections, and genetic factors. 

Age is still the primary risk factor, with dementia being most prevalent in those over 65 years old, but those who smoke, eat a poor diet and do not exercise could be more at risk of developing dementia down the line. Also, according to the World Health Organization women experience higher mortality due to dementia, and also provide around 70% of care hours for those living with dementia.

How is dementia diagnosed? 

Diagnosing dementia is a process that requires discussion with the individual themselves and their family in order to fully understand the scope of symptoms and how far they have progressed. The National Institute for Health and Care Excellence says diagnosis of dementia typically involves steps such as:

• Undertaking an initial assessment to understand the person’s medical history by speaking to them and people who know them well, such as family or close friends.
• Assessing the person’s current level of cognition and function, compared to whatever is considered to be their base level. The aim is to determine whether or not there has been a significant decline in cognition since the onset of symptoms. 
• Asking questions about the impact symptoms have on daily activities, such as eating, getting dressed, continence, taking medications, managing personal finances, and so on. 
• Asking questions about safety in the home and elsewhere.
• Discussing any cognitive, behavioural or psychological changes.
• Looking at the risk factors for dementia, such as family history, alcohol or drug use, medication history, and more. 
• Assessing for any coordination abnormalities, sensory issues, motor symptoms, visual or auditory problems, cardiovascular signs, or other causes of symptoms.
• Arranging relevant blood tests to rule out other possible causes of symptoms.

If you believe you or a loved one may have symptoms of dementia, the process of being diagnosed may seem frightening, but it is important to address symptoms as soon as possible in order to find out if dementia is the true cause, or if something else could be the problem. In any case, the earlier you seek medical help for symptoms of dementia, the more chance there is to potentially slow the progression of the disease and put help in place for you ahead of other symptoms developing. 

How is dementia treated and managed?

There is no cure for dementia, so treatment is focused on managing the symptoms and ensuring those with the disease remain as healthy as possible for as long as possible, with the best quality of life possible. Dementia can be managed with:

• Medications: For some types of dementia, there are medications available that can help to alleviate symptoms and keep the brain working well for longer. 
• Therapy: Certain therapies can help people with dementia maintain their functional abilities. 
• Support: Support from family, close friends and caregivers is so important for those with dementia so they continue to feel safe and surrounded by people they trust when other things in life feel uncertain. 
• Lifestyle modifications: Maintaining a healthy diet and getting regular exercise and movement has been shown in studies to help slow cognitive decline. Creating a structured routine can help those with dementia to feel more confident, and they should also be encouraged to continue taking part in hobbies and social gatherings if desired. 
• Environmental modifications: Ensuring the home environment is safe and optimised for a person with dementia is important to help them continue their normal daily routine as much as possible and maintain independence for longer. 

While treatment will not stop dementia from progressing, having a multidisciplinary Care Plan in place can help to ensure those living with dementia continue to feel safe and supported, and can maintain their independence.

Can anything be done to lower the risk of dementia? 

Lifestyle adaptations can help to lower the risk of developing dementia later in life, so if this is something you are worried about, you may wish to adopt some of the below healthy practices:

• Regular physical exercise or movement – This should be a mix of aerobic and strength-training if possible 
• Maintain a healthy diet – Try to include lots of fruits, vegetables, and omega-3 fatty acids in your meals
• Take care of your heart – Cardiovascular risk factors like hypertension and diabetes can contribute to cognitive health too, so look after your heart to look after your brain 
• Mental stimulation – Stay mentally stimulated with activities like reading, puzzles and social interactions
• Avoid excessive alcohol consumption – Evidence suggests that excessive alcohol consumption increases risk of dementia, so managing your alcohol intake is recommended
• Quit smoking – Smoking is associated with an increased risk of dementia, so quitting is the best way to reduce your likelihood of developing the disease later in life  
• Getting enough sleep – Studies have suggested that not getting enough sleep can increase your risk of dementia later in life, so prioritising this is important 
• Manage stress levels – Chronic stress has been associated with an increased risk of cognitive impairment and Alzheimer’s disease, so managing your stress levels is important 

Being given a dementia diagnosis for yourself or a loved one can be an incredibly difficult and uncertain time, and you will likely have a lot of questions. While your doctor will be your first port of call for all things medical, you may also have concerns about where you will live, whether or not you will be able to continue living in your own home, or how you will cope with everyday tasks like getting ready in the morning and cooking meals – for these questions, remember you can reach out to your local council to arrange a Care Needs Assessment.

What Is Alzheimer’s?

Alzheimer’s disease is a dementia condition, and is the most common type of dementia around the world. If you or a loved one has recently been diagnosed with Alzheimer’s, you will understandably have questions about the causes and symptoms, how it affects the brain, how it is different from other types of dementia, how it progresses, if there are any treatments or management techniques to help, and more. 

We understand that the days, weeks and months following an Alzheimer’s diagnosis can be both physically and emotionally challenging, not just for the person with the diagnosis but for their family and caregivers, too. 

What is Alzheimer’s disease?

Alzheimer’s disease is the most common type of dementia in the UK, affecting around 6 in 10 people with dementia. It is a neurodegenerative condition affecting cognitive function and memory retention, and leads to the progressive deterioration of nerve cells and brain tissue over time. This can cause a range of symptoms that increase as the condition progresses. 

A person with Alzheimer’s may notice mild symptoms at first, however these will worsen over time and start to interfere with daily activities. It will gradually impair reasoning, judgement, and problem-solving abilities, and as the condition advances, the person might struggle to perform tasks that they once did effortlessly. As well as changes in physical abilities, a person with Alzheimer’s disease may also notice changes in their mood over time, such as becoming more anxious, irritable or depressed.

What are the symptoms of Alzheimer’s?

Alzheimer’s disease causes a range of symptoms that differ from person to person, and develop at different rates. People with Alzheimer’s tend to experience symptoms such as:

• Memory problems (from mild forgetfulness in the early stages, to forgetting recent events and names of loved ones) 
• Confusion about familiar places or people 
• Difficulties with reasoning
• Language and communication problems which can lead to repetitive speech patterns
• Disorientation in time and space that can change the way they see and hear things
• Changes in their mood, such as depression or anxiety 
• Behavioural changes, such as agitation or irritability 
• Challenges in problem-solving which can mean they require more help 
• Physical challenges with carrying out everyday tasks and activities, like cooking dinner or getting dressed 

Symptoms of Alzheimer’s can initially appear after age 60, and the risk of developing Alzheimer’s increases with age.

What causes Alzheimer’s, and how does it affect the brain?

The cause of Alzheimer’s disease is still largely unknown, but it is thought to directly affect the function of the brain. In those who age healthily, the brain tends to shrink naturally with age to a certain extent, but it should not lose neurons in large numbers, and should continue to function mostly as normal. 

In those who suffer from Alzheimer’s disease, over time neurons within the brain will cease to function as they should, and will also lose connections with other neurons. Ultimately, these neurons will die, which disrupts the neuron networks that deal with typical functions, leading to symptom development. 

Initially, Alzheimer’s disease usually impairs the connections in areas of the brain that deal with memory, such as the hippocampus. Eventually it can affect other areas, and this can diminish functions such as reasoning, communication and behaviour. As more areas of the brain stop working over time, the person will likely require care for everyday activities and tasks, and to ensure their safety. Eventually, an Alzheimer’s diagnosis will lead to end-of-life care. 

How is Alzheimer’s different from dementia? 

The terms Alzheimer’s and dementia tend to be used interchangeably, but they are different. Dementia is the overall condition causing cognitive decline, and there are several types of dementia, with Alzheimer’s disease being one of them – the most common form of the condition. As an overview, here are some of the other common forms of dementia, and how they differ from Alzheimer’s disease: 

• Vascular dementia is the second most common type of dementia, affecting around 150,000 people in the UK. Unlike Alzheimer’s, this condition is caused by interruptions in the flow of blood vessels and oxygen within the brain. This means symptoms are often determined by the size, location and number of vascular changes. The symptoms of vascular dementia and Alzheimer’s disease are very similar, with issues being things like changes in memory, cognition, and behaviour. 
• Lewy body dementia is the third most common type of dementia, affecting around 100,000 people in the UK. This type causes very similar symptoms to that of Alzheimer’s disease, which is why it is often misdiagnosed as Alzheimer’s in the early stages. Lewy body dementia is thought to be characterised by abnormal clumps of protein gathered in cells in the brain, but symptoms are unique for this type of dementia. They can include hallucinations, fluctuations in alertness, difficulty with movement, and sleep disturbances, which are not as common in Alzheimer’s. 
• Frontotemporal dementia is a less common type of dementia, but is still estimated to affect around 31,000 people in the UK. This type is most common in people aged between 40 and 60, which is younger than those who tend to suffer from Alzheimer’s. It is characterised by issues in the frontal and temporal lobes in the brain due to a build-up of proteins, and since these areas are responsible for things like personality, behaviour, language and speech, symptoms often affect these functions. Uniquely, memory loss is not the norm in the early stages of frontotemporal dementia. 

How does Alzheimer’s progress over time? 

Alzheimer’s is a progressive disease, meaning it will go through several stages before eventually leading to the need for end-of-life care. Typically the early stages of the condition will include small memory lapses and mild cognitive difficulties, with some being subtle enough that they may not be noticed at all. A person with early stage Alzheimer’s may find they can continue to live mostly as they have previously, and may only need help with a few things. 

As the condition advances and reaches the middle stage, they may start to struggle with daily activities, familiar tasks, and experience issues with things like disorientation, communication and their mood. 

In the severe stage, everyday functions such as dressing, eating and mobility usually become challenging, and language and communication may deteriorate further. As end-of-life care approaches, a person with Alzheimer’s will usually begin to lose awareness of their surroundings and struggle to recognise loved ones. 

It is unknown how long each stage will last for Alzheimer’s patients as each person’s condition will develop at a different rate, however research suggests those with Alzheimer’s may experience a longer survival time than those with vascular or Lewy body dementia. Although it is estimated that those with Alzheimer’s may live between 4 and 8 years after diagnosis, they could also live up to 20 years after diagnosis if they are otherwise healthy.

Are there any treatments available? 

There is no known cure for Alzheimer’s disease, so treatment involves managing the condition in order to promote wellbeing and quality of life throughout the progression of the disease. Certain treatments can help to alleviate the symptoms and slow progression. These include things like:

• Medications to slow progression: Some medicines can be offered to help maintain high levels of acetylcholine in the brain, which can help nerve cells send and receive signals, and help manage the cognitive symptoms experienced. This can improve overall quality of life for some people living with the condition, and you can speak to your GP about this if you have been diagnosed. 
• Medications to address symptoms:Research shows that treating the symptoms associated with Alzheimer’s can improve quality of life. This could include antidepressants, sleep aids, antipsychotics, anti-anxiety medications and more. Again, your GP can offer more information on the medications that could help you. 
• Lifestyle interventions: These might include regular movement and exercise, adopting a healthy diet, regular activities to stimulate cognitive function, and more. If you receive home care, your Care Professional can help with things like mobility support, travel to social events, cooking healthy meals, and setting up regular activities to stimulate the brain. 
• Therapies: Things like occupational therapy and speech therapy can offer different benefits for those with Alzheimer’s by helping to enhance functioning and offering emotional support throughout. 

Can anything be done to lower the risk of Alzheimer’s or prevent it? 

Although there is no way to remove all risk of developing Alzheimer’s disease in older age, there are thought to be ways to lower the risk and potentially prevent it by focusing on brain health. This often means: 

• Adopting a regular exercise routine to promote blood flow to the brain
• Eating a balanced diet rich in fruits, vegetables, and omega-3 fatty acids to support brain function
• Doing mentally stimulating activities such as puzzles, learning new skills, and engaging in social interactions, as these have been shown to help maintain cognitive function

While there is no guaranteed method of preventing the condition, a generally healthy lifestyle can significantly reduce the risk of developing Alzheimer’s disease. 

If you have recently been diagnosed with Alzheimer’s or have been living with the condition, you may be looking into future Alzheimer’s care options for when you need help at home. Thinking of the care you might need in future can be an overwhelming experience, and this is something you should not need to go through alone.

The Different Types Of Dementia

Dementia is an umbrella term that refers to a number of different conditions, all of which can impair cognitive function. The causes, symptoms and outlook for those with dementia will depend largely on the individual, but could also be impacted by the specific type of dementia they have. 

Dementia refers to a range of medical conditions with symptoms involving impaired cognitive function. Dementia conditions are caused by a disruption or damage to neurons in the brain and their connections, meaning messages cannot be sent efficiently around the brain. 

Symptoms can include things like memory loss, impaired communication, affected decision making, mood and personality changes, and more.

What are the most common types of dementia? 

There are many types of dementia, however only a few are particularly common in the UK. Here are the types of dementia you are most likely to come across:

1. Alzheimer’s disease

How common is it? Alzheimer’s is the most common type of dementia, affecting around 6 in 10 people with dementia in the UK. 

What causes it? The cause of Alzheimer’s disease is mostly unknown, but it is thought that one reason is a buildup of two substances in the brain called amyloid and tau, which can form plaques and tangles. This can make cognitive function harder, and in the long-term it can reduce the chemicals necessary for sending messages around the brain, and cause certain parts of the brain to become smaller. 

What are the symptoms?People with Alzheimer’s tend to experience memory problems, difficulties with reasoning, communication problems, changes to the way they see and hear things, and changes in their mood. 

2. Vascular dementia

How common is it? This is the second most common type of dementia, which affects around 150,000 people in the UK. 

What causes it? Conditions interrupting the flow of blood vessels and oxygen within the brain. Symptoms can be impacted by the size, location, and number of vascular changes in the brain, and these can develop either gradually or suddenly.

What are the symptoms? Like other types of dementia, vascular dementia can cause changes to memory, cognition, and behaviour. People with vascular dementia will continue to decline over time, although they may see short periods of improvement. 

3. Lewy body dementia (LBD)

How common is it? The third most common type affects around 10-15% of those with dementia, which means around 100,000 people in the UK, but it is often misdiagnosed as Alzheimer’s in the early stages. There are two subtypes; dementia with Lewy bodies, and Parkinson’s. It is important to note those with Parkinson’s have a higher risk of dementia, but this does not mean they will definitely develop it. 

What causes it? It is unclear what causes Lewy body dementia, but it is thought to possibly be caused by abnormal clumps of protein gathering inside cells in the brain. 

What are the symptoms? Symptoms that set Lewy body dementia apart from other types of dementia include hallucinations and fluctuations in alertness. Those with Parkinson’s may also have difficulty with movement. Sleep disturbances are a key feature of Lewy body dementia, affecting up to 90% of those with the condition (as a comparison, sleep disturbances only affect around 40% of Alzheimer’s patients). 

4. Frontotemporal dementia (FTD)

How common is it? Frontotemporal dementia is a less common type of dementia, but still accounts for around 1 in 30 cases of dementia in the UK, which is estimated to be around 31,000 people. This type of dementia is most common in people aged between 40 and 60. 

What causes it? This is another umbrella term which refers to a number of dementia conditions impacting the frontal and temporal lobes in the brain. It is thought to occur due to a buildup of proteins that can be genetic for some people with the condition. 

What are the symptoms? The frontal and temporal lobes are the areas in charge of our personality, behaviour, language and speech, so frontotemporal dementia mainly causes symptoms involving these functions. Memory loss issues that are more common in other types of dementia are not the norm for the early stages of frontotemporal dementia. 

5. Mixed dementia

How common is it? This type of dementia means a person is diagnosed with more than one type of dementia, and this is the case for at least 1 in every 10 people with dementia. More than one dementia diagnosis is most common in those aged over 75, and the most common combination is Alzheimer’s disease and vascular dementia. 

What causes it? Mixed dementia means more than one type of dementia, so the causes may also be mixed. 

What are the symptoms? As the name suggests, mixed dementia means a person with more than one type of dementia would experience symptoms from more than one condition.

6. Young-onset dementia

How common is it? Despite the stereotype of dementia only affecting older adults, younger people can in fact develop dementia too. In fact, around 70,800 people with dementia in the UK are thought to be under 65. 

What causes it? There is no clear reason why some people develop young-onset dementia, although it is thought that certain types of dementia in young people may be inherited.  

What are the symptoms? Dementia in younger people tends to manifest differently, for example, they are more likely to develop a rare form of dementia, less likely to experience memory loss early on, and more likely to experience issues with movement, walking, coordination or balance. 

What differentiates the types of dementia? 

It can be difficult to know what differentiates the types of dementia when most forms can lead to similar symptoms of memory loss and communication issues. Ultimately when being diagnosed, doctors will look at what is going on inside the brain, what symptoms the person is experiencing, the person’s age and other risk factors to determine which type of dementia is present.  

Are there rarer types of dementia? 

As well as the more common types of dementia mentioned above, in the UK around 1 in 20 people with dementia have a more rare version. These include:

• Atypical Alzheimer’s disease  – This is another form of Alzheimer’s where the changes occur in a different part of the brain, causing different symptoms than would typically be expected with Alzheimer’s. Under the umbrella of atypical Alzheimer’s disease, there is also frontal variant Alzheimer’s disease (fvAD) which affects around 1 in 50 people with Alzheimer’s and impacts the frontal lobes of the brain in the early stages, and posterior cortical atrophy (PCA) which affects the back region of the brain called the visual cortex. 
• CADASIL – CADASIL stands for Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy, and is a rare, inherited vascular disease that can cause symptoms of dementia. It is caused by a faulty gene, which can lead to the person having a number of mild strokes that damage the brain tissue connecting parts of the brain. Symptoms often appear in those aged 30 to 50, and around 2 in 3 people with CADASIL will develop dementia at some point in their lives.
• Corticobasal syndrome (CBS) – This type of dementia typically affects those aged between 60 and 80, and causes symptoms like issues with movement, language, memory and visual perception. Movement issues may include stiffness or slowness, moving in a jerky motion, having issues with balance or coordination, and more. There is currently no cure for this condition, but certain medications can help to reduce some symptoms.
• Creutzfeldt–Jakob disease (CJD) – This rare brain disorder can lead to dementia, with symptoms similar to those found in Alzheimer’s disease. The exception is that it is more fast-acting, as symptoms tend to progress within a few weeks to a few months. Creutzfeldt–Jakob disease is extremely rare, affecting only around 1 or 2 people per million around the world yearly.
• HIV-associated neurocognitive disorder (HAND) – Many people with HIV take a medicine called ‘combination antiretroviral therapy’ (cART), which keeps levels of the virus low in the body. However, before this medicine existed, those with HIV could develop dementia. Though this is now uncommon, people with HIV may still experience mild cognitive impairment, called HIV-associated neurocognitive disorder. For this reason, those diagnosed with HIV should have their cognitive and emotional wellbeing assessed once a year.
• Huntington’s disease – This rare disease leads to progressive degeneration of nerve cells in the brain, which can impact functional abilities in a similar way to dementia conditions, and lead to movement, cognitive and psychiatric disorders. The condition is caused by an inherited difference in a single gene, and most often first appears in people in their 30s or 40s. While there are medications available to help manage symptoms, they do not prevent the physical, mental and behavioural decline that the condition can cause. 
• Normal pressure hydrocephalus (NPH) – This brain disorder causes excess cerebrospinal fluid to accumulate in the brain’s ventricles, which can cause movement, thinking and reasoning problems similar to dementia conditions. It most often affects those in their 60s and 70s, and an estimated 700,000 adults suffer from the condition, although it is often misdiagnosed as Alzheimer’s or Parkinson’s. 
• Progressive supranuclear palsy (PSP) – This rare brain disorder causes serious issues with balance, eye movement, swallowing and more, and results from the breakdown of cells in areas of the brain that control movement and other functions. The cause is not known, and the only proven risk factor is age, as it tends to affect those in their late 60s and 70s. Research shows that this condition causes excess amounts of a protein called tau to build up within the brain, which is a characteristic of disorders like Alzheimer’s disease. There is no cure for progressive supranuclear palsy, but treatment can help to manage symptoms. 

How is dementia diagnosed? 

There is no cure for dementia, so getting an accurate diagnosis as early as possible can help to ensure you receive the appropriate care before requiring more help. Your GP will often be the first person to discuss a possible dementia diagnosis with, however they may refer you to a neurologist specialising in the brain and nervous system, or a geriatric psychiatrist.

Some of the steps involved in reaching a diagnosis include: 

• Ruling out other treatable conditions that can have cognitive-based symptoms. This may be done via a physical exam to assess vital signs, blood, hormones, and more.
• A review of medical and family history to ascertain dementia risk.
• Cognitive and neurological tests to evaluate thinking and physical functioning.
• Brain scans to identify strokes, tumours and other issues that could be causing dementia, as well as changes to the brain’s structure and function. These might include scans such as computed tomography (CT), magnetic resonance imaging (MRI), or positron emission tomography (PET).
• A psychiatric evaluation to determine why someone is experiencing behavioural or mood changes.
• Genetic tests to find out if dementia is caused by the person’s altered genes.
• Cerebrospinal fluid (CSF) tests may be ordered to measure the level of proteins and other fluids that surround the brain and spinal cord.

While a dementia diagnosis can be a worrying and uncertain time, you should never put off receiving a diagnosis, as performing these tests and examinations as early as possible means doctors can identify signs and symptoms of dementia conditions and start available treatments to help you or your loved one manage the condition and plan ahead for the future.

Considerations For Dementia Care

What Is Dementia Care?

If you or someone you love has recently received a dementia diagnosis, you may have questions about how to move forward and live with the condition. This is where dementia care comes into play, and we are here to help answer any questions you have about what this is and how it works.

Dementia care is essentially a care package provided by experienced carers, specifically designed to help those with a dementia diagnosis who are finding it difficult to live on their own at home. 

Why do people with dementia require care? 

If you or a loved one has a dementia diagnosis or has been living with the condition for a while, eventually the need for specialised care will become apparent. According to the World Health Organization, dementia is currently one of the leading causes of disability and dependency in older people around the world, so having bespoke care – whether that takes place at home or in a care home – is necessary to ensure the person with dementia remains in the best health possible, with their wellbeing prioritised. 

Although different types of dementia will deteriorate at different rates, over time all people with a diagnosis of a dementia condition will experience their health and cognitive function decline, which means specialised dementia care is key. 

Care is particularly important for those with dementia as they may be able to move around and look after themselves physically, but no longer have the mental capacity to make good decisions about their own care, and therefore could be causing damage to themselves or others if not cared for by a knowledgeable dementia care expert. 

When someone struggles with things like reasoning and communication skills, then everyday tasks like getting washed and dressed in the morning, or cooking food for themselves, become dependent on a caregiver. As dementia continues to deteriorate, daily supervision and care helps to stop the individual from hurting themselves or others, or becoming confused and frightened about their situation. 

What is involved in dementia care? 

Dementia can affect many areas of a person’s life, so dementia care needs to be a multifaceted approach that helps to address the many health and wellbeing needs of the person living with the condition. 

This might mean someone requires personalised help with day-to-day activities like:

• Getting washed and dressed
• Reminders to eat regular meals and help with cooking 
• Medication management
• Help with housework and looking after pets when this becomes too difficult 
• Mobility support if and when necessary 
• Regular health checkups, and coordinating other healthcare professionals
• Removing any potential hazards so the home space is safe
• Organising cognitive and physical activities to help maintain mental stimulation
• Emotional support as the condition progresses 

Generally, dementia care requires an ability to provide companionship, create a safe and supportive environment, evolve communication strategies as communication needs change, have patience and empathy during tough times, and be there to support the person and their family through the emotional challenges that come with dementia. 

Cases of dementia are unique to each person and will continue to progress over time. It is important to keep ahead of the person’s individual condition changes and organise regular assessments and care plan adjustments to meet their health and wellbeing needs.

How do you know when it’s time to organise dementia care? 

Often family members will opt to care for loved ones with dementia themselves, whether to save on cost or because they do not feel comfortable leaving their care in the hands of someone else. Many hours of care are provided around the world by family members, and in fact, according to the World Health Organization, in 2019 dementia conditions cost economies 1.3 trillion US dollars globally, and around 50% of this cost was attributed to care by informal carers who provide on average 5 hours of care every day.

It is understandable in the early stages of dementia to feel that you may be able to handle things by yourself, or by working on a rotation with other family members. However, as dementia is a progressive disease, eventually further care is often needed – the question for most people is, when is the right time to arrange formal dementia care? 

It is extremely difficult to make the decision on when the time is right for a loved one with dementia to either be moved into a care home or to start receiving home care. You may have questions about who ultimately makes this decision if the person cannot make it themselves, where the person should live, and what level of care is needed. 

When making the difficult decision about what is in the best interest of the person with dementia, it can help to ask some of the following questions: 

• Is it sustainable for you to provide all of the care the person needs while still prioritising their wellbeing? 
• Can the person make the best decisions for their own care?
• What option (home care or a care home) would provide the most benefits for the person with dementia and for yourself if you are currently caring for them? (You will find pros and cons for both options later in this article) 
• Have you had previous conversations with your loved one about what sort of care they would prefer? Or have they made this clear in a previous care plan? 
• What option do you believe would make the person with dementia feel most content and safe? 
• Do you have anyone else you can discuss the decision with in order to air your questions and concerns? 
• How much has the person’s dementia deteriorated and in what space of time? (As many care homes will require the person to be added to a waiting list, understanding the rate of cognitive decline the person is experiencing can help with planning for a future care home entry) 
• Can the person still live independently and safely? Or are you worried about their safety when at home on their own, or their safety outside of the house? 
• Do they have complex medical needs (dementia or otherwise) that need to be regularly monitored?

How do you have a conversation about dementia with a loved one? 

Discussing the need for dementia care with a loved one with the condition can be difficult, awkward and upsetting for everyone involved, but with some forward planning it can become more manageable and solution-focused. Above all, approaching a conversation about a loved one’s dementia takes a large amount of sensitivity and trying to understand what it feels like from their side. 

Here are a few tips on how to begin this discussion:

• Choose the right setting – Somewhere quiet and familiar is usually best, and try to set aside enough time for the discussion so you will not be interrupted part way through. 
• Express your concerns – Focusing on your worries over their health and safety is the best way to begin, so they understand you are keeping their best interests at heart.
• Use gentle, positive language – This can help to keep the conversation calm and avoid any distress for the person with dementia.
• Provide examples of difficult times – Discuss times when the person may have experienced things like distress or memory issues, but never make this feel confrontational. Instead, focus on making sure they know you are there to support them in always feeling safe and confident.
• Ask them about their experiences – If they want to talk about it, encourage them to open up about times when they felt unsafe or uneasy, and genuinely try your best to understand how they are feeling.
• Be as patient as you can – Even if the conversation does not initially go the way you think it will, maintain patience. Remember, you may need to have the discussion more than once. 
• Suggest professional advice – Let them know that it is important to get professional advice on their diagnosis in order to make sure they always receive the best care.

Remember, the earlier you are able to have this discussion, the better. Often a person with dementia will need to move into a care home or start receiving specialist care due to an unexpected event like an accident, hospital admission, or their regular carer becoming ill. Having the conversation and deciding the person’s needs and wishes early can mean you avoid having to make last-minute, rushed decisions, and can instead focus on making more calm, considered choices without time pressure. 

Why is person-centred care important for those with dementia? 

Person-centred care means putting the person requiring care at the centre of the discussion in order to prioritise their quality of life, promote their wellbeing, and provide a sense of contentment, confidence and security. This is particularly important for those suffering from dementia conditions, since so much of their daily life can feel uncertain and frightening. 

Dementia is a completely unique condition for every individual, so each person will find themselves with their own set of care needs. By providing person-centred care, we can ensure their care is bespoke to them, prioritise their wellbeing, and even champion their desires and interests. 

What are the pros and cons of a care home for someone with dementia?

When deciding on the best way to approach the care needs of someone with dementia, understanding the pros and cons of each option can help to make the choice clearer. As many people will consider care homes as an option for a loved one with dementia, here are the potential benefits of moving a person with dementia to a care home: 

• Someone with dementia might feel safer in a care home in case of emergencies, where there is specialised care from trained staff.
• There are many opportunities for social interaction within a care home, from multiple staff members to other residents. 
• In a care home, there is 24-hour supervision which means you don’t need to worry about the person with dementia becoming confused or putting themselves in danger.
• Care homes often work to a set schedule and routine, which can be beneficial for those with dementia to give them structure. 
• Care homes are regulated and assessed by the Care Quality Commission, which means residents can be assured that they are getting a good standard of care.  

As with any choice, there are also downsides to someone with dementia moving to a care home. These include: 

• A care home is not a familiar environment, which can be particularly stressful for someone with dementia who already feels confused.
• Moving to a care home means the person has less control over their own schedule and choices, which can also be distressing for someone with dementia.
• Living in a care home could mean less time spent with family, friends or pets.
• If someone with dementia lives with a partner who does not have the same care needs, moving to a care home could mean they are separated. 
• Care homes can be one of the most expensive choices for care, and some people will not be able to afford a place in one. According to Age UK, a place in a care or nursing home costs on average £800 to £1,078 per week depending on where you live in the country and other factors. 
• Care homes do not always offer the best choice for general health, as studies show that care home residents have an increased risk of experiencing acute hospitalisations, and also have an increased risk of infections.

What are the pros and cons of home care for someone with dementia?

Another option that proves to be very popular for those with dementia is to receive home care, which is when a trained professional carer (or several carers on rotation) will visit to provide all of the essential healthcare and companionship from the comfort of the person’s own home. Here are the pros of home care:

• The person can stay in their own, familiar environment which avoids the stress and disorientation of moving. Studies have found that for a person with dementia, being in an unfamiliar setting with strangers (like a care home) can foster feelings of stress, confusion and anxiety, so staying at home could be the best option for their mental health. A 2013 study also found those living with dementia at home experienced higher activity levels, quality of life, and felt more socially connected than those living in a care home, plus a further study found that after one month of home care, participants were less likely to develop acute confusion than those in care homes. 
• Home care can provide an extremely personalised care plan that prioritises the person’s own needs and preferences. 
• Family members and friends can visit more often and be more involved in their relative’s care if they remain at home. 
• Home care can be easily adapted as the person’s needs change, which is likely to happen often in the case of dementia. Live-in care is also an option for someone who needs a lot of care throughout the night. 
• With home care, a person with dementia can maintain full control of their routine and mealtimes, which can be beneficial and make them feel more settled. 
• Home care can offer a more personal, intimate caregiver relationship. 
• With home care, a person may still be able to attend local events and social gatherings, which may not be possible if living in a care home. 
• A person with dementia might find it easier to maintain their hobbies and interests while still living at home. 
• Home care can have positive effects on wellbeing and happiness. One study found patients getting home care experienced the same positive health outcomes 6 months later as those who were admitted to hospital, but saw higher levels of patient satisfaction. 
• For those with pets, home care means a person with dementia can continue to be around their beloved animals which can help maintain their sense of wellbeing.
• Home care can be a more affordable option for many people depending on how many hours of care are required, as they only pay for the care they need rather than paying for a place in a care home when they do not yet need 24/7 care. 

There can be downsides to the home care option too. These include: 

• If a person with dementia requires constant supervision for their safety, home care may not be the most financially efficient option as a care home would provide 24/7 care (live-in care is also an option)
• For those providing home care for a family member, they may lack the professional knowledge and experience needed to provide the best care (there are expert dementia carers who can visit the home to offer this).
• If family members are caring for a person with dementia in their own home, they may experience burnout as the person’s condition progresses (in this instance, respite care can be a great option – more on this below).
• Home care may mean less social interaction than a care home would provide, however with forward planning, social visits and outings can be organised by carers. 
• In a small number of cases, the home may not provide the ideal set-up to be considered safe and comfortable for someone with dementia (although many home adaptations can be made to change this if needed). 

How much does home care cost for someone with dementia?

The cost of home care for someone with dementia in the UK varies greatly depending on the level of care required, and where in the country the person lives. Since dementia care often involves specialised training and experience, this can also influence the cost of care. The UK government actively aims to keep older people living at home for as long as possible, so there are a lot of support options in place for anyone who is interested in receiving care within their own home instead of moving to a care home.

Most agencies can offer care on an hourly or daily basis, but in the case of a client with dementia, a tailored package of services is often the ideal way to ensure they receive the very best care for their exact needs. As an example, a client who was living with mid-stage dementia required a package of specialist care for 14 hours per week, which cost them £490 per week.

Can you get respite home care for someone with dementia?

Yes, respite care is available to those caring for a loved one with dementia, and this could provide temporary relief for caregivers who may be struggling to keep up with increasing care needs as the condition advances. Researchers in the US found that 97-99% of patients and their caregivers had unmet dementia-related care needs, which shows the importance of caregivers taking regular breaks and holidays from their duties in order to continue providing the best care to their loved one, and to maintain their own mental health and wellbeing. 

Trained professionals can offer respite care to take over assisting with daily activities, medication management and other needs, including ensuring the person with dementia remains safe and comfortable while their regular caregiver is away. Respite care offers the chance for regular caregivers to avoid burnout, maintain their own wellbeing, and attend to personal matters like events or holidays. This type of care can be arranged as a regularly scheduled break, or on an ad-hoc basis when needed.

What should you consider when finding a dementia carer?

If you choose to pursue dementia care at home, there are a few ways you can go about finding a dementia carer:

1. You may be assigned a dementia carer through your local council after going through the Care Needs Assessment
2. You can look to hire a dementia carer privately on behalf of your loved one using an Introductory Agency, but do keep in mind this means you will become an employer and be responsible for paying the carer yourself
3. You can employ a dementia carer through a managed agency like Home Instead. We will do background checks on your behalf, help match you with an expertly trained carer who can manage your loved one’s needs and take into account their personality and preferences, and organise respite care if and when their regular carer needs to take time off. 

Caring For Someone With Dementia At Home

Becoming a carer for a loved one with dementia has many ups and downs. While it allows you to spend quality time with them and feel assured that they are always taken care of, it can also be extremely difficult to witness the cognitive decline and advancing physical needs of someone you love. 

How do you know if someone needs dementia support? 

Dementia is a progressive disease, and while in the early stages it may cause only mild symptoms, over time these will escalate until the person requires additional care. Some common signs and symptoms of dementia include things like memory loss, communication issues, impaired decision making, mood and personality changes, lack of interest in activities, and struggles with daily tasks. 

Symptoms can appear early, but others won’t be noticeable until the later stages of dementia, so it can be difficult to determine when a loved one may need further care and help at home. If you are starting to notice cognitive and behavioural changes in them and you are worried about their safety living independently at home, evaluating their needs could be a positive next step. This involves a Care Needs Assessment (more on this later). 

A person with dementia may need:

• Practical support, such as reminders to do certain things
• Social support, such as help to attend local groups or maintain attendance at church
• Emotional support, such as maintaining focus on the positives where possible
• Healthcare support, such as eating a healthy diet or moving around

What if my loved one doesn’t accept that they have dementia? 

There are many reasons someone may struggle to or refuse to accept that they have dementia and need more help, and understanding these reasons can help you to empathise and provide reassurance. Denial is often a coping mechanism to protect a person’s sense of identity and autonomy, and their reasons for this may include:

• A fear of losing their independence
• A fear of not being able to do activities they enjoy
• A fear of loss of dignity
• Guilt about receiving care (studies show care receivers often feel guilty about receiving more care than they can give in return)
• Concerns about stigma 
• A fear that loved ones will visit less
• A dislike of strangers in the home 
• Worries about paying for care

While it can be frustrating when a loved one does not accept their diagnosis, it is important to approach the conversation with empathy and patience so you can express your concerns gently and focus on a solution that works for both of you. 

Organising a Care Needs Assessment can also be a good way to bring in insights from trusted healthcare professionals that may support your suggestion for additional care needs. 

How do I get a Care Needs Assessment for a loved one with dementia?

A Care Needs Assessment is an assessment to find out what a person needs for their health-related care and social support. This assessment will take into account things like:

• Their mobility needs (i.e. could they benefit from home adaptations?)
• Their communication needs (i.e. do they need companionship?)
• Their personal care needs (i.e. are they struggling with washing and dressing?)
• Their medical conditions (i.e. do they have any medical concerns requiring medication or check-ups?)

Someone with dementia can benefit from a Care Needs Assessment as their symptoms progress and they need more help in these areas. Their local community healthcare team (regulated by Integrated Care Systems) can help to arrange a Care Needs Assessment, or you can contact the local authority on behalf of a loved one to arrange this if you think they may be struggling to cope due to their dementia diagnosis. 

How can I help my loved one with dementia care? 

Supporting a loved one with dementia is challenging, but there are many ways you can help them at home whether you are caring for them full-time, or sharing the duties with other family members or a home care service. The help they need will depend on the stage of dementia they are experiencing, which could be early, middle or late stage. 

In the early stages of dementia, it can help to:

• Try to enable them to maintain their independence and normality as much as possible 
• Establish familiar routines to provide comfort and stability in their daily life 
• Encourage engagement in activities they enjoy to stimulate cognition and foster a sense of purpose
• Offer emotional support, validate their feelings, and acknowledge their experience with compassion
• Encourage them to help with tasks like shopping for groceries, setting the table, and walking the dog if they can 
• Implement memory aids like labels and calendars

In the middle stages of dementia, it can help to: 

• Simplify tasks and their environment to minimise confusion and frustration
• Ensure their safety at home by removing hazards 
• Ensure they are drinking enough throughout the day to avoid things like headaches and constipation 
• Ensure they are eating enough throughout the dayClearly label all areas of the house and useful items to make it easier for them to locate what they need
• Assist with getting washed and dressed each day 
• Help calm them if they suffer from something called “sundowning”

In the late stages of dementia, it may help to: 

• Coordinate medical professionals visiting the home to provide medication and pain relief 
• Provide companionship to avoid the person feeling isolated or scared when confused 
• Make necessary adjustments to the home to ensure their safety, especially if they are prone to walking around unaccompanied 
• Help them around the home if they are experiencing mobility issues or a complete loss of their ability to walk
• Be present during mealtimes if they are struggling to swallow food
• Assist with incontinence issues or getting to the bathroom if they need help or forget where this is 
• Ensure their personal care needs are taken care of to avoid infections and other complications

Everyone’s symptoms and level of competence is entirely different depending on their health and the stage of dementia they are in, so although a Care Plan can help to structure a person’s care, it is important to remember that caring for someone with dementia requires flexibility and the ability to pivot or adapt when changes occur.

Is there any help available for those caring for someone with dementia? 

If you are caring for someone with dementia, you should never feel alone in doing so, as there are support options that could help such as home care services, respite care, and financial assistance. 

Research shows that family caregivers of patients with dementia tend to experience social isolation, physical health deterioration, and psychological disorders like depression, so it is vital to take care of your own mental health throughout all stages of a loved one’s dementia, even if you feel too busy or stressed to do so. 

Some of the options available to you include: 

• Home care – Your local council will be best placed to assess what your loved one needs and the care they can provide. This could look like a regular home carer visiting on a weekly basis, several days a week, or even a full-time carer if you feel unable to cope.
• GP support – Tell your GP that you are a carer for a loved one with dementia. By registering as a carer, you may be able to gain access to helpful information from your GP, plus support opportunities and benefits such as free annual health checks. You may also be able to access community services like support groups, counselling and educational programs that are specifically created for caregivers to provide emotional support for this challenging position. 
• Carer’s Assessment – You can organise a Carer’s Assessment which looks at the work you are doing and offers a chance to discuss your needs with your local council to gain additional support. 
• Financial support – Carers can access financial benefits like the Carer’s Allowance. Alzheimer’s Society estimates there are around 700,000 unpaid carers in the UK looking after people living with dementia, so if you fall under this category be sure to look into what you may be entitled to. 
• Respite care – This is available for carers who need to take time off whether for an illness, a special event, a holiday, or something else. You should not feel required to take on all caring responsibilities without breaks, so remember respite care is available to you should you need it.

You can find additional information for carers through organisations like: 

• Dementia UK
• Alzheimer’s Society
• Age UK

How do you know when end-of-life care is needed?

End-of-life care is required when someone is going through the final stages of an incurable illness, and needs specialist care to manage their pain and comfort as they approach the end of their life.

Recognising the need for end-of-life care can be difficult, and will often be informed by medical professionals looking after your loved one’s medical needs in the late stages of dementia. Progressive decline in cognitive ability, loss of appetite, difficulty swallowing, and increased pain can indicate signs of the person approaching the end of their life, which is when end-of-life care will be implemented. 

As early as you can, you should organise for an End of Life Care Pathway document to be created so that everyone involved in this stage of care understands what needs to happen based on the person’s personal wishes and requests. Planning ahead for this eventuality ensures your loved one will receive what they need and want, with their wellbeing prioritised and their dignity maintained. 

Building A Care Plan For A Dementia Patient At Home

The Care Plan is a central part of dementia care, as it lays out everything carers, family members and medical professionals need to know about how a person with dementia would like to be treated and cared for, and the specifics of that treatment and care. 

What is a dementia care plan? 

If you are caring for someone with dementia at home, care planning can take a few different forms. Firstly, you will likely have a daily care plan for things you must (or want to) carry out with your loved one – such as mealtimes, exercise, medication and more. As well as what you plan for each day, a larger dementia Care Plan document can be created to collate all available information about the person’s care in one place, enabling everyone involved in their care to understand what needs to happen and stay up to date with any changes. 

A dementia care plan covers the basics, such as the assistance a person with dementia needs to carry out everyday tasks, and instructions for caregivers and medical professionals so they know what medication they should give and when. However, it goes into much more personal detail than this, diving deeper into the person’s life before dementia, their beliefs and preferences when it comes to their care, their likes and dislikes, and much more – this is the essence of person-centred care, and it prioritises the person’s individuality over simply administering medicines and covering their basic needs. 

Although not a legal document, a comprehensive Care Plan is important to ensure the person’s care is of the highest quality, their wellbeing is always front-and-centre, and their carers are able to build a strong relationship with them based on trust and understanding. 

Who puts a Care Plan together? 

There are several people who can do this, however in most cases the team involved in the person’s care – this is often community nurses, social workers and GPs – will assess the person’s situation and work together to create a plan that takes into account all of their medical and care needs. The family will also be involved in this planning process in order to bring a more personalised element and ensure it focuses on the individual rather than being a one-size-fits-all Care Plan. 

What does a dementia Care Plan include? 

The document containing the dementia Care Plan covers a lot of ground, but should remain personalised to the individual it concerns. This means the exact details of what is contained in each Care Plan will be unique to the person and their condition. That said, there are a few elements you may notice in every Care Plan document, such as:

• Details about the person’s dementia condition, rate of progression and behavioural symptoms 
• Their preferences for care
• Their medical history
• An evaluation of their cognitive functioning
• Their physical health details 
• The goals and desired outcomes of the Care Plan, for example, if the person wants to maintain independence, this should be prioritised for as long as possible 
• Information about their medication management, including schedules, dosages and more
• Information about their life, character and personality – this is so important for person-centred care in order to ensure the person’s dignity is maintained and that they can trust and enjoy the company of their caregivers 
• Notes on subjects or things that can make the person upset, frustrated or angry 
• Strategies for managing challenging dementia-related behaviours
• Tracking their physical health, such as their vital signs, mobility and more 
• Any nutritional needs they have, such as deficiencies or foods they do and don’t like 
• Activities they enjoy, or that could help to stimulate their cognitive function
• Information about the person’s home to ensure they remain safe and comfortable there 
• Their preferences and wishes when it comes to their cultural needs, faith, and any other special considerations that will help them to feel comfortable 
• Information on support for family members and those caring for the person with dementia  
• Any necessary legal information, such as Power of Attorney documents 
• Regular reviews of the Care Plan’s effectiveness and suggestions for updates
• Contingency plans for any issues that may come up 
• Continuity plans, such as ensuring handovers are smooth and thorough 
• Plans for end-of-life care 

A dementia Care Plan is designed to be bespoke to the individual, adaptable as the person’s needs progress, and comprehensive so that everyone involved in the person’s care understands exactly what is needed, and what the person has asked for. 

What if the person does not agree to the Care Plan?

A Care Plan can be beneficial for ensuring everyone involved in a person’s care understands their medical needs, care needs and personal preferences, but it becomes harder to implement if the person with dementia is resisting. This could come in the form of denial about their diagnosis, not cooperating with medical professionals, refusing care from family members or carers, or any form of opposition to the plan. 

This might happen due to fears about losing their independence, losing their dignity, feeling out of control, and more. Although this can be frustrating, remaining calm and having empathy and patience at all times is the most effective way to address their concerns. 

If possible, express your reasons for things in a gentle way, with a focus on their safety and care. There may be things that need to happen for their wellbeing, and it is sometimes helpful to explain the steps involved calmly, enable them to voice their reservations, validate them, and discuss why you believe this solution is the best one for everyone involved.  

If there are any instances of refusal of important things such as medication, it may help to enlist a trusted healthcare professional who can support your suggestions and provide further reasons as to how this will benefit the person in the long run. Remember, your loved one may be finding it difficult to accept that you are providing their care, and may need further reassurance from an external source on occasion. 

How is home care arranged?

If home care is being implemented for your loved one as part of their Care Plan, then you may be wondering where to start when arranging this. Often having a conversation with the person’s GP is helpful as they can talk you through how this works, recommend any medical and care options that will help your loved one, and put you in touch with your local community healthcare team (regulated by Care Quality Commission) to arrange home care. 

A free Care Needs Assessment will usually be required, which means the person’s local social services team will come to their home and discuss what may be needed in terms of care and safety. Their recommendations could include things like carers, personal alarms, home adaptations, support groups, and more. They can also carry out a financial assessment to learn whether or not you are eligible for home care funding. 

If you do not go through the person’s GP first you can still arrange this by reaching out to the adult social services department of your local council. Or, if you or your loved one plans to independently fund their home care, you can bypass the Care Needs Assessment and contact your chosen home care agency or private carer to set this up without delay. 

Home care can be provided by:

• Family: Many people prefer to be looked after by a loved one as they feel more comfortable with them. If you have opted to care for your loved one either on a part-time or full-time basis, remember you could be eligible for a Carer’s Allowance to offer financial support, and you can look into respite care in order to give yourself necessary time off from caring responsibilities, whether for a holiday, special event, or just to recharge your batteries. Respite care offers many benefits to carers, so it is extremely helpful to be aware of the services available to you.
• Private carers: Hiring a private carer can be helpful to give you full control over the care of your loved one, and find someone who can provide the necessary services within your budget. However, do keep in mind that hiring a private carer means you will become financially and legally responsible as their employer. 

• Agency carers: There are many agencies in the UK, such as Home Instead, offering paid-for home care options. Whether you need full-time, live-in care for things like mobility support, or just someone to pop in a few hours a week to help with personal care, an agency can provide bespoke care according to the Care Plan you have created.

What happens when the person’s condition worsens? 

Dementia is a progressive disease that goes through several stages, from mild symptoms in the early stages, to worsening symptoms in the middle stages, and eventually will develop into severe dementia in the late stages. Every person’s condition will deteriorate at a different rate, and this could be based on factors like the specific type of dementia they have, their overall health and wellbeing, any other medical conditions they have, and more. 

Worsening symptoms in dementia are inevitable, and eventually you should be prepared for end-of-life care, which is required when someone is going through the final stages of the condition and requires specialist care to manage their pain and comfort as they approach the end of their life. 

The end-of-life care stage can last for several weeks or months depending on the person’s condition and the speed at which their health deteriorates, so it is difficult to plan for this, but important to try to do so. Ultimately, this time is about minimising symptoms, enabling them to die with dignity, and managing their pain. 

By this stage it is helpful to already have had discussions with your loved one about what they would like to happen in the event that they require end-of-life care, and an End of Life Care Pathway document may be created to ensure everyone involved in the person’s care is on the same page and understands what needs to happen in their final months, weeks and days. These plans also help to avoid situations where you need to guess what your loved one’s preferences might be or make decisions for them that you are not confident about.

Building a Care Plan for a person with dementia who chooses to remain at home is a necessary and useful step in their care, which can help to set out all of the information for loved ones, caregivers and medical professionals to better understand the person’s needs and wishes. It also offers consistency and continuity of care from the early stages of dementia all the way through to end-of-life care. A Care Plan is a great opportunity for your loved one to have agency over their own care if they are in a position to be able to make choices about what is included in this plan, so the earlier you can involve them in this the better the outcome for everyone. 

Supporting Dementia At Home

Making The Care Plan Work: How To Talk To Someone With Dementia

A Care Plan for someone with dementia is a vital tool that can help guide the actions of everyone involved in a person’s care. However, it is only effective if the person with dementia is on board with the plan. When someone displays common behavioural symptoms of dementia, such as confusion and irritation, it can be difficult to have a conversation with them about their diagnosis and future. 

Here, we are looking at how you – as their family member or caregiver – can start making their Care Plan a reality by addressing their concerns and speaking to them directly about the next steps. From the initial conversation about the possibility of dementia, to what to say and do after a diagnosis has been made, to the discussion about needing home care and support, this is your comprehensive guide to having conversations with someone with dementia to create a person-centred Care Plan for them and put this into practice.

If your loved one is struggling to accept they may need help, or you are worried about what you should and should not say to a person with dementia, this guide can make things clearer for you. 

What symptoms does dementia cause?

If you are looking after a person with dementia or someone who you suspect may have this condition, you are probably already familiar with the symptoms it can cause. Dementia is a collective term for a number of progressive neurological disorders that impair cognitive function beyond what is expected with normal ageing, and around 900,000 people currently live with dementia in the UK.

Dementia causes damage to some of the neurons in the brain over time, and common signs and symptoms of dementia that can develop include things like memory loss, disorientation, losing track of time, communication issues, impaired decision making, lack of interest in activities once enjoyed, and struggling with daily tasks. 

Another symptom of dementia that you may notice in a loved one is mood and personality changes, and it is often these changes that contribute to the potential distress, anger or denial they may display when faced with the subject of their dementia diagnosis or Care Plan. 

Why might someone find it hard to accept they have dementia? 

Accepting that you are experiencing cognitive decline and will eventually lose control of your mind and body is an extremely upsetting prospect for anyone. Some of the reasons people may find it hard to accept this can include:

• Fear of stigma
• Worries about losing their independence
• Losing their sense of personal identity
• Requiring help when they are used to doing things for themselves
• Feelings of shame or inadequacy around their cognitive decline
• Facing an uncertain future
• The worry of when end-of-life care will be required

With the support of family members and a structured Care Plan in place which outlines the stages to be expected and what will happen, the person may start to feel more comforted knowing their physical, psychological and emotional needs will be taken care of, and their wishes and preferences listened to.

How do I suggest to a loved one that they might have dementia? 

Approaching your loved one to discuss a potential case of dementia requires a certain amount of sensitivity and empathy: 

• Pick a quiet, private setting to broach the subject, somewhere you won’t be interrupted 
• Focus on using a calm tone of voice and gentle language during the conversation 
• You may find it best to start by asking them how they have been feeling and how they think their health is  
• Mention your concern and assure them this comes from a place of wanting to make sure they access the best care, and that they are safe at home
• Bring up specific examples of times when they may have shown symptoms of dementia, such as memory lapses or confusion 
• Listen to their thoughts and reassure them that however they feel about the situation is OK
• Emphasise the importance of seeking a medical evaluation as early as possible to slow any symptoms that may have already started 
• Offer to accompany them to appointments and help them with whatever they need – remember the idea of seeking a dementia diagnosis may seem overwhelming to them, so offer as much support as you can to make this process easier 
• End the conversation by letting them know you are there for them no matter what happens 

How do I encourage my loved one to seek a diagnosis for their symptoms? 

The first step after having a conversation about possible dementia is to seek an appointment where the person’s GP can ask questions and carry out the necessary diagnostic tests. It may take several appointments in order to find out more about what is going on and if dementia is in fact the cause of symptoms, but reaching out to organise an initial appointment as soon as you can is key to starting the process. Their GP may refer them to a clinic specialising in dementia conditions in order to gain more insight into what is going on. 

If your loved one feels comfortable with you doing so, it can help to attend appointments with them to gather the relevant information, understand more about their condition, and provide emotional support throughout. Your loved one may not feel confident about collecting the relevant information from the GP, so having you there can give them peace of mind. 

What will happen at the initial appointment? 

At the initial appointment, their GP will usually ask about symptoms and how your loved one is coping with daily activities like getting washed and dressed, cooking meals, going shopping, paying bills and so on. They may also discuss any memory issues experienced by your loved one, as well as accompanying symptoms like depression, anxiety and confusion. 

Keep in mind that some of their questions and tests will be to rule out other conditions that may be causing similar symptoms to that of dementia, and could be treated and cured. The GP may choose to do a physical examination, blood tests, urine tests and any other tests they feel could help shed light on the situation.

If dementia is suspected, your loved one’s GP may then refer them to a dementia specialist who can further investigate. 

What should I say to my loved one if they receive a dementia diagnosis? 

The hours and days following a dementia diagnosis will be extremely distressing for your loved one, and it will undoubtedly upset you and other family members too. In such situations, it is difficult to know what to say to make them feel better.

The best way to support your loved one during this time is often to reassure them that you will be there to help every step of the way, and take on anything you can to ensure they do not have any additional stress during this time (remember you can look into home care and respite care if you are struggling to manage your own life responsibilities around your care duties). 

After the dust has settled on the diagnosis and your loved one feels more comfortable discussing what needs to happen next, there are a few things that should be put in place early, such as a Power of Attorney and a Care Plan.

How should I talk to my loved one with dementia? 

Looking after a loved one with dementia can be a difficult balance to strike. On one hand you will want to treat them exactly the same as always to maintain your relationship, but you may find this causes them confusion as their cognitive symptoms progress. On the other hand you may feel the need to adapt the way you speak to them, but feel you run the risk of treating them more like a child than an older relative. 

Some adaptation is often needed as your loved one’s condition progresses, and this takes creativity and listening to continue communicating with them in a way that feels comfortable for you and also helps them understand everything that is going on.

Here are some tips for the best ways to communicate with someone with dementia:

• Listen to what they say and make it known you are listening by making eye contact, nodding and smiling at appropriate times. If they feel you are listening they will be more likely to open up about their thoughts and feelings.
• If you don’t understand something they say, encourage them to repeat it and say it back to them in clear language so you can confirm you understand. 
• Pay attention to their body language and facial expressions. As their verbal communication changes over time, you may be able to gauge more of how they feel based on other signals. 
• Sometimes a person with dementia will struggle to find the correct word or phrase to explain what they mean, which can make them frustrated. Encourage them to explain it in a different way if they are struggling, or if they want something they may be able to describe it instead of naming it directly. Think of ways to help them along, but try not to speak over them or interrupt as it can distract them. 
• Give them extra time to respond if they need it, and don’t rush them to finish a sentence or answer a question. 
• Allow them to express their feelings fully if they are upset, and try not to dismiss their worries or minimise how they feel. 
• As their communication diminishes over time, it may help to use simple, short sentences, focus on using a calmer tone of voice when speaking to them, and speak slower if you think it will help them to understand you better. 
• Although their symptoms can become frustrating if you are caring for someone with dementia, always avoid speaking to them as you would a child or being condescending. Maintaining the appropriate level of respect in the relationship is important for both of you. 
• Avoid speaking to care professionals or medical professionals about them as if they are not in the room. Where possible, always include them in the conversation by explaining what is happening, even if they cannot answer or get involved. 
• When misunderstandings inevitably happen, try to laugh about them together. You don’t want the person to feel like you are laughing at them, but making light of situations where possible can help to keep their spirits up. 
• Reassure them during conversations by nodding, smiling, and – if they respond well to physical touch – hold their hand or stroke their arm to let them know you are there to help if needed.

Is there anything I should avoid saying or doing?

It is important to prepare for situations where your loved one might feel frustrated and lash out in a way that could upset you. It is typically best to avoid things like correcting their memories about past events, using complex language, speaking in slang words or metaphors, pressuring them into doing something they do not want to (unless this is something that will benefit their wellbeing), changing their routine drastically, patronising them, or putting them in situations where they may feel overstimulated and overwhelmed. 

Over time you may start to recognise the words, statements and actions that upset, anger or distress them, and can take steps to avoid these situations where possible. Or, by properly managing them when they arise, you can calm your loved one and avoid making things worse. 

How do I get them to accept they may need additional help? 

Your loved one’s health and cognitive abilities will likely deteriorate to a point where they need more help. If they choose to remain in their own home, they may require home care to stay safe and comfortable there. This care can come from either yourself or a care professional, but either way it requires structure and organisation to put in place and maintain. If your loved one refuses to accept they need help from anyone, this can become a problem. 

Have patience with their decision to accept care, and validate their emotions and concerns by addressing each one and offering a solution for how you can both tackle this together. For example, if they are worried about losing their independence you can assure them of what you think will help them to keep this for as long as possible, such as making home adaptations so they can remain safe at home alone, or bringing in an overnight carer to ensure they have everything they need when you are not there. 

It can also help to share examples of how others with dementia have benefitted from home care and other types of support, and include your loved one in the decision making process, such as allowing them to meet potential carers and decide if they could be a good fit. 

Emphasise your unwavering support and commitment to their wellbeing, and let them know your suggestions are to help them feel safer and happier while also addressing your needs as a carer.

How do I bring up their advancing needs and suggest home care?

As your loved one’s care needs evolve over time, eventually they may have specific medical requirements or care needs, and decisions must be made about whether they will move into a care home, nursing home or remain in their own home.

Home care can be a positive option for people with dementia; a 2013 study found those living with dementia at home experienced higher activity levels, quality of life, and felt more socially connected than those living in a care home, while another study found that after one month of home care, participants were less likely to develop acute confusion than those living in a care home. 

The benefits of home care may be clear to you, but your loved one might feel apprehensive about admitting they need more help, accepting help from a stranger, or accepting help from their family members.

It is best to acknowledge the areas they may be struggling with now, for example if they are finding personal care activities difficult (such as getting dressed or cooking), or their mobility limitations are causing safety concerns. Try to include them in the discussion; instead of telling them you are bringing in home care, allow them to acknowledge their own struggles and be part of brainstorming solutions.

Managing The Stages Of Dementia

If you are looking after a loved one with dementia, or trying to plan ahead for their care, you may be taking steps to understand more about how dementia conditions such as Alzheimer’s disease progress over time. 

How do dementia conditions progress? 

There are many different types of progressive dementia conditions, such as Alzheimer’s disease, vascular dementia, Lewy body dementia and more. Determining how quickly each condition progresses and the specific symptoms you should be looking out for depends on a number of factors, including the type of dementia the person has been diagnosed with. For example, research finds that those with vascular dementia or Lewy body dementia tend to have a shorter survival time than those with Alzheimer’s disease. 

It has also been determined that in most dementia cases life expectancy depends on factors such as the person’s age, sex, and any other conditions they have. For example, a person may survive for around 3 to 6 years, but the average post-diagnosis survival time for women is 4.6 to 5.1 years, whereas for men it is 4.1 to 4.3 years. 

Ultimately, it is extremely difficult to know how long someone will live with the condition. In the case of Alzheimer’s disease, which accounts for 60-80% of dementia cases, a person may live between 4 and 8 years after diagnosis, but they could also live up to 20 years after diagnosis if they are otherwise healthy. 

It is difficult to predict the early, middle and late stages of dementia, but it is important to understand that all types of dementia are progressive and over time the brain will become damaged. By acknowledging this, you and your loved one can plan ahead for this eventuality as much as possible.

What are the stages of dementia? 

There are three main stages of dementia that someone might go through over several years. 

1. Early stage dementia 

This stage is also sometimes referred to as mild dementia, and is the stage where the person first starts to experience symptoms. Often these mild symptoms can be difficult to notice, and can sometimes be mistaken for general age-related lapses in memory or judgement. 

In the early stages of dementia, a person may still be able to function as they always have, but they might notice small instances of memory loss, such as forgetting certain words, forgetting where things are in the home, or forgetting recent events. 

Other symptoms present at this stage can include personality changes, becoming lost easily (even if they are in a familiar place), difficulty solving problems, and difficulty with administrative tasks like managing finances. They may also start to become more irritated, frustrated, or anxious due to their declining abilities. 

The early stage of dementia can last up to 2 years, and during this time it is important to encourage the person to continue with tasks they are still able to do, and hobbies and interests that they still enjoy. By doing so, they can remain active and engaged rather than becoming withdrawn. 

2. Middle stage dementia 

This stage is also sometimes called moderate dementia, and it brings with it more noticeable symptoms. A person with middle stage dementia will likely find it much harder to perform daily tasks like getting washed and dressed, or cooking their meals, which means more daily support is needed. 

A person with middle stage dementia may start to experience things like more confusion and memory lapses (such as forgetting the names of family and friends), more repeating themselves, less ability to make decisions for themselves, and more extreme personality and behavioural changes (such as saying inappropriate things). 

They may also experience more long-term memory loss, possible hallucinations and paranoia, altered sleep patterns or confusion and restlessness at night, and “sundowning.” According to the Alzheimer’s Society, middle stage dementia can last for the longest time, which is on average between 2 and 4 years. 

3. Late stage dementia 

This stage of dementia is also known as severe dementia, and means the person will likely require full-time care at home for all personal care, or be moved to a nursing home for specialist care. 

During this stage, symptoms can include a complete loss of ability to communicate, or a severely altered way of communicating. They may also notice an altered perception of time, lack the ability to recognise their family, friends or themselves in the mirror, and experience mobility issues or a complete loss of their ability to walk, hold themselves up or swallow food. Incontinence may become an issue, and at this stage they may be more susceptible to infections like pneumonia. 

This stage of dementia tends to be the shortest, lasting around 1-2 years. 

4. End-of-life care 

There are 3 main stages of dementia, but it is important to note that after late stage dementia often comes the end-of-life stage, where the individual will require palliative care. We will share more on this stage below. 

How can you prepare for each new stage?

Identifying the progression to the next stage of dementia is not easy, as each person’s condition will gradually decline over time at a different rate. As dementia progresses, the person will start to require more help and care, and eventually (in the later stages) will need full-time care. Knowing when and how this will happen is not always possible, but you can become aware of the stages mentioned above and the symptoms likely to occur. Keep in mind a person will move into the next stage gradually, and there is rarely an overnight change. 

By understanding the stages of dementia mentioned above, you can make rough predictions for what the best medications are likely to be and when they are likely to be needed. In some cases, biomarkers can be used to determine roughly which stage of dementia someone is in. Research finds that regular evaluation of a patient with dementia combined with biomarker assessments can help to identify what is going on in the person’s body and, in some cases, predict the stage of disease and future instances of cognitive decline.  

In cases of dementia, advance care planning is crucial both for the person with dementia and for their caregivers. It is even associated with improved outcomes such as less hospitalisations, and more alignment between the care received and the prior wishes of the patient. Although dementia care comes with new difficulties at all stages, ultimately, the more you are able to plan in advance for the likely eventualities of your loved one’s dementia condition, the easier this will be to manage physically and logistically when the time comes. 

How quickly does dementia progress?

The speed of cognitive decline and dementia progression is often different for each individual depending on their gender, age, other health conditions and the type of dementia they suffer from. 

The three stages of dementia mentioned above give an indication of roughly how long each stage – early, middle and late – is likely to last. However, in some cases dementia can progress faster or slower, and research has found that slow dementia progression after diagnosis is common in patients who:

• Have mixed Alzheimer’s and vascular dementia
• Are younger in age 
• Are male 
• Do not receive acetylcholinesterase inhibitors (AChEIs) which can help to slow cognitive decline 

What support is needed at each stage? 

Some amount of support will be required at each stage of dementia, but this will almost certainly increase as the condition progresses. The level of support needed for a person with dementia will depend on a number of factors, and at Home Instead, we believe this support should be person-centred, bespoke to each individual, and take into account their personal wishes and needs. 

By providing person-centred care, their wellbeing is prioritised as well as their health goals. Examples of this may be focusing on what the person is feeling instead of what they can or can’t remember, and encouraging them to continue doing the things they still can do, without focusing on what they can no longer achieve on their own.  

A person with dementia may require:

• Practical support – This might be reminders to do things, or putting a power of attorney in place
• Social support – This could mean help to attend local groups or maintain attendance at their church
• Emotional support – This might be keeping focus on the positives where possible
• Healthcare support – This may be eating a healthy diet or moving around as much as possible

Remember, late stage dementia will require considerably more care than early stage dementia, and the person may rely on their family, friends or a professional caregiver for daily tasks. If you are caring for someone with dementia, remember that research shows family caregivers of patients with dementia tend to experience social isolation, physical health deterioration, and psychological disorders like depression, so taking care of your own mental health throughout all stages of a loved one’s dementia is incredibly important. 

Keep in mind that respite care can provide adequate breaks so you can maintain your own life responsibilities and avoid burnout in order to continue offering your loved one the best care possible. 

When is it time to make the shift from ongoing care to palliative care?

Thinking about the end of life stage when you or your loved one remains in the early stages of the condition can feel daunting and upsetting, but forward planning is incredibly important in order to make the later stages easier on all involved. Implementing advance care planning can help an individual with dementia decide how they would prefer to be cared for during palliative care, where they would like to live, and who they would like to be involved.

It is not known the best way to define end-of-life, which makes it difficult to know when the best time is to bring in a specialised palliative care team. A person in the later stages of dementia may become more frail, have more frequent falls or infections, struggle to eat and drink by themselves, suffer from incontinence, be more likely to require urgent medical care, sleep more often, become bed-bound, and communicate less or not at all. 

These are all signs that a person with dementia is nearing the end of life, however studies have found that healthcare professionals and family members both have difficulty identifying when someone with dementia is nearing the end of life. They suggest a need to avoid focusing on cognitive and functional decline, as this may fail to recognise more subtle signs and complex needs of someone with dementia who is at the end of life. 

Studies also suggest that planning ahead for palliative care has many benefits, and can help with end-of-life conversations, symptom management, hospital visits and behaviours, so having discussions in advance can be helpful in the long run for everyone involved.

How can a person with dementia maintain the best quality of life?

For a person in any stage of dementia, focusing on quality of life is important since so much of their condition will be uncertain. Studies find that depression and anxiety are highly prevalent in all stages of the condition, so making sure the person with dementia has everything they need to feel comfortable and safe, and prioritising their wellbeing at all times with person-centred care, is vital.  

When in the palliative care stages, maintaining the best quality of life usually means addressing their physical, emotional and social needs with things like pain management, therapy for anxiety and depression, and regular contact with family and friends. If possible, maintaining activities that the person finds enjoyable – such as art or knitting – can also help to promote the best quality of life in those with dementia. Overall, the aim is to create a dignified end-of-life experience in order to make the process manageable for all involved. 

How can care be adapted as dementia progresses? 

Care must be adapted as a person’s dementia condition progresses in order to maintain their health and wellbeing when they can no longer take care of this themselves. This might mean ensuring the person eats healthy meals every day, helping them get around the house if their mobility starts to decline, organising visits from various healthcare specialists if needed, and making changes to the home in order to keep the person safe. 

Dementia care can often feel like the goal posts keep moving, but understanding the constant need for evolving care and using advance care planning can help you to manage the process. If you are caring for a loved one with dementia, remember the importance of bringing in regular respite care to give yourself breathing space during this difficult time. You may also consider ongoing home care as an option to ensure your loved one receives tailored, person-centred care throughout all stages of dementia.

More dementia and Alzheimer’s resources

• Resources and information from Dementia UK
• Resources from the Alzheimer’s Association
• Support and information from the Alzheimer’s Society
• Dementia advice and support from the NHS