Dementia Training - Module one Version 4

[Virtual Presenter] Person Centred Approach to Dementia Care: Training Guide. Module One: Understanding Dementia. Welcome to the first module of our person centred approach to dementia care training guide. Over the years, dementia has been defined in various ways, often resulting in confusion and uncertainty. In this module, our aim is to clarify the meaning of dementia. This clarity will support you as you progress further in your training and throughout your journey as a caregiver. By focusing on the essence of dementia, we will remove the external distractions and misconceptions that often cloud our understanding. Ultimately, our approach is to recognise two key elements: the specific type of dementia and, most importantly, the individual living with the condition. It is essential to always remember the person at the heart of the diagnosis. Dementia does not define them. Instead, they are mothers, wives, daughters, husbands, fathers, brothers, sisters, grandparents, uncles, aunts, friends, colleagues, or individuals entrusted to our care. Each person living with dementia has dreams, desires, ambitions, families, friends, and lives of their own. People living with dementia deserve to be treated with dignity and empathy. This begins with a true understanding of what dementia is, and what it is not. What are the areas of focus in this module? To foster a clearer understanding of dementia, we will take a detailed look at the following areas: What is dementia? Symptoms of dementia: Exploring whether dementia is a group of symptoms or conditions. Delirium and dementia: Understanding the importance of identifying delirium and the reasons why this is critical. Stroke and dementia: Examining how strokes act as a major risk factor for developing vascular dementia, and why this is the case. Brain injury and dementia: Gaining insight into the causes of traumatic brain injuries, how they affect the brain, and their relationship with dementia. Diagnosis pathway:Considering why the process of diagnosis can be lengthy and challenging. Stages of dementia: Discussing the significance of the stages, their duration, and their relevance. The brain and dementia: Each module will include a section on what is happening in the brain and how these changes impact the person living with dementia. Understanding these changes is key to providing person centred care. Throughout the course, you will also find practical tips and stories from real people to deepen your understanding and bring these concepts to life. Shall we begin? Our journey starts by seeking the answer to an important question: “What is dementia?”.

[Virtual Presenter] Dementia is often misunderstood, so it is useful to begin by clarifying what dementia is not. Contrary to popular belief, dementia is not a single disease. This distinction is important and will be explored in greater detail, helping to explain why dementia is described in this way. It is equally essential to recognise that dementia does not necessarily come as a normal part of ageing, even though the risk increases as people grow older. While ageing is a major risk factor, dementia occurs more frequently in individuals over the age of 65. In fact, 65 is the age commonly regarded as “old”, a definition set by societal norms and authorities. Currently, there is no cure for dementia. The condition is progressive, meaning symptoms worsen over time, and it is ultimately considered terminal. Individuals with dementia may experience a range of symptoms, including memory loss, difficulties with language and communication, problems concentrating, and changes in behaviour and personality. However, it is important to note that these symptoms can also be associated with other health issues, such as mild cognitive impairment, the natural ageing process. Given the overlap in symptoms with other conditions, how can we differentiate dementia from other health concerns? Before exploring this question, it will be helpful to consider some of the more common types of dementia together..

[Audio] Dementia is an umbrella term for a group of brain conditions, this would include diseases and brain related injuries, that damages the nerves and brain cells, causing them to decline over a period of unspecified time.

[Audio] Although we may refer to someone as having dementia, it is important to understand that 'dementia' itself is not a specific diagnosis. Instead, it is a collective term that encompasses a variety of distinct brain conditions. An accurate diagnosis will always identify both the type and, often, the subtype of dementia that a person is experiencing. There are numerous types of dementia, with some of the most commonly recognised being Alzheimer's disease, vascular dementia, dementia with Lewy bodies, and frontotemporal dementia. Each of these types presents in different ways and can affect individuals differently. In fact, there are more than 100 different types of dementia, highlighting the complexity and diversity of the condition. Furthermore, the number of subtypes exceeds 200, adding another layer of intricacy to the diagnostic process. These figures are based on various classifications and ongoing research, reflecting the evolving understanding of dementia. Many people may not realise, for example, that Alzheimer's disease itself consists of several distinct subtypes, each with its own unique set of characteristics and symptoms. Taking the time to understand the various types and subtypes of dementia is crucial. This knowledge is invaluable for developing a person-centred approach to care, ensuring that support and interventions are tailored to the individual's specific needs. With this in mind, let us explore some of the most common types of dementia in greater detail..

[Audio] We have categorised the types of dementia into three categories, which you will see in the blue boxes as they come up. The first is Secondary Neurodegenerative. These are a types of dementia that are diagnosed due to an existing neurological condition and possible lifestyle choices. The second, you will see primary neurodegenerative types of dementia that are due to genetic and metabolic risk factors. Perhaps there are more of these types of dementia than you thought? The difference between primary and secondary dementia is relevant for treatment and therapy as the symptoms of secondary dementia are often reversible. Alzheimer's disease is the most prevalent form of dementia, accounting for approximately 70% of all diagnosed cases. It is primarily characterised by memory loss, confusion, and noticeable changes in behaviour and personality. The disease is currently understood to result from the accumulation of amyloid plaques and tau tangles within the brain. These abnormal protein deposits interfere with communication between brain cells and ultimately lead to cell death. For most individuals, the earliest symptoms involve mild memory loss, which gradually progresses to severe cognitive impairment, impacting daily activities and independence. It is important to note that in young-onset dementia, the initial symptoms may affect other areas of the brain before memory loss becomes apparent. Generally, Alzheimer's follows a steady decline over several years. Vascular dementia is the second most common type of dementia. It is caused by reduced blood flow to the brain, which is often the result of strokes or small vessel disease. The symptoms can vary depending on the specific brain regions affected, but typically include problems with planning, reasoning, judgement, and memory. In contrast to Alzheimer's disease, vascular dementia may have a more sudden onset and often progresses in a stepwise fashion. This means there may be periods of stability followed by sudden declines in cognitive abilities. Dementia with Lewy bodies is characterised by the presence of abnormal protein deposits known as Lewy bodies within the brain. These deposits disrupt normal brain cell functioning, leading to a range of symptoms such as fluctuating attention and alertness, visual hallucinations, and movement difficulties similar to those seen in Parkinson's disease. Additional symptoms may include sleep disturbances and autonomic dysfunction, which can affect blood pressure and heart rate. These features may appear earlier in dementia with Lewy bodies than in other types of dementia. Frontotemporal dementia refers to a group of disorders resulting from progressive nerve cell loss in the frontal and temporal lobes of the brain. This condition often affects younger individuals, typically those between 45 and 65 years of age. Symptoms commonly include significant changes in personality and behaviour, difficulties with language and communication, and impaired executive function. Frontotemporal dementia can be subdivided into several subtypes, such as behavioural variant frontotemporal dementia, primary progressive aphasia, and frontotemporal dementia with motor neuron disease. These are associated with different types of symptoms depending on which area of the brain is affected. All of the aforementioned types of dementia can be further broken down into specific subtypes, each presenting with its own unique set of characteristics. Understanding these distinctions is essential for accurate diagnosis and tailored care..

[Audio] Each major type of dementia, including Alzheimer's disease, vascular dementia, and frontotemporal dementia, can be further divided into several subtypes. Alzheimer's disease has five recognised subtypes, vascular dementia also comprises five subtypes, and frontotemporal dementia includes six distinct subtypes. Every type and its subtypes possess unique characteristics, highlighting the fact that conditions such as Alzheimer's disease or frontotemporal dementia are not uniform in nature. Instead, the experience of these conditions can vary significantly from one individual to another. As a result, individuals diagnosed with the same type of dementia may display different symptoms and patterns of progression. This diversity means that care providers must be attuned to the specific needs and characteristics of each person. The approach to care should be tailored to match the individual's journey, recognising that no single method or technique will be effective for everyone. Personalised care is essential in supporting people living with dementia, ensuring that their unique circumstances are respected and addressed..

[Virtual Presenter] Dementia occurs due to disruption in the functioning of the brain. As highlighted earlier, this disruption leads to a range of common symptoms. The symptoms listed are not exhaustive; rather, they offer a general and simplified overview of the ways dementia can affect individuals. Each type of dementia presents its own characteristics and symptoms, but these distinctions can become less clear as the condition advances. As dementia progresses, it can become increasingly difficult to distinguish one type from another. In the later stages, this overlap of symptoms is referred to as late stage mixed dementia. Regardless of the type of dementia diagnosed at the beginning of a person’s journey, most people eventually reach this stage, where features of different forms of dementia become intertwined. This raises several important questions: • Why is it so difficult to diagnose dementia? • Is it accurate to describe dementia as a group of symptoms? • How can we identify delirium? • What are the stages of dementia? These are excellent questions, and together we will explore the answers. Next, we will take a closer look at some of these symptoms and consider whether it is correct to define dementia simply as a group of symptoms..

[Audio] The symptoms being discussed here provide a general and simplified overview of dementia. This approach is intentional: it allows us to establish a clear foundation for understanding the progression of dementia and how cognitive function is impacted. Dementia is a progressive condition characterised by a decline in cognitive abilities, which is significant enough to interfere with a person's daily life. The symptoms listed previously demonstrate how this decline manifests in real-world situations. It is worthwhile to revisit these symptoms, not only to reinforce our understanding but also to provide a comparison. By examining dementia symptoms alongside signs of natural ageing, we can begin to appreciate the differences and similarities between the two processes..

[Audio] When we examine the signs of natural ageing, it quickly becomes apparent that many of them are similar to those seen in dementia. This observation is not surprising, as natural ageing can indeed bring about changes in cognitive function. However, it is crucial to recognise that natural ageing is not itself a form of dementia, even though the symptoms may appear much the same on the surface. The changes in cognitive function that occur as part of natural ageing are usually mild and, most importantly, do not have a significant impact on a person's ability to go about their daily life. While ageing is a high-risk factor for developing dementia, not all instances of cognitive decline in older adults are due to dementia. Sometimes, these changes are simply a part of getting older. A universal fact of life. One of the key differences between natural ageing and dementia is the underlying cause. In natural ageing, there is no disease or brain injury responsible for the cognitive changes. In contrast, dementia is driven by specific diseases or injuries affecting the brain. It is helpful to recall the main symptoms of dementia and compare them closely with those seen in natural ageing. Looking at these symptoms and signs side by side can serve as a useful reminder of where the two processes overlap and, more importantly, where they diverge. With this understanding in place, we can now turn our attention to mild cognitive impairment for a closer look at how it fits into the spectrum between natural ageing and dementia..

[Audio] When reviewing the list of symptoms associated with Mild Cognitive Impairment, it becomes evident that these symptoms closely mirror those found in both dementia and natural ageing. The similarity can be surprising, as the changes in cognitive function overlap significantly across all three conditions. Mild Cognitive Impairment is characterised by cognitive changes that are more pronounced than what is typically seen in natural ageing. However, these changes do not reach the severity required to interfere significantly with daily life, as is the case with dementia. This positions mild cognitive impairment as an intermediate stage between normal ageing and dementia. A crucial aspect of Mild Cognitive Impairment is its role as the brain's early warning sign that something may be amiss. While the presence of mild cognitive impairment does not necessarily indicate the onset of dementia, it does alert us to the possibility that an underlying issue is affecting cognitive function. Potential causes might include depression, anxiety, stress, hormonal imbalances, sensory overload, or vitamin deficiencies, among others. Early detection of Mild Cognitive Impairment is important, as it allows for identification of underlying causes and, in some cases, the possibility of halting or even reversing cognitive decline. Taking proactive steps at this stage can have significant benefits. To illustrate, consider how we react when a warning light appears on the dashboard of our car. We typically seek to have the car inspected as soon as possible, aiming to prevent a breakdown and ensure we reach our destination safely. In much the same way, Mild Cognitive Impairment serves as a warning light for our brain. Addressing the issue early can sometimes "turn off" or reset this warning, especially if the underlying problem is rectified. In certain cases, addressing Mild Cognitive Impairment early can stop or stabilise the condition, and in rare situations, the cognitive decline may even be reversed. This could mean being able to continue life as usual, perhaps with only minor lifestyle adjustments. However, if Mild Cognitive Impairment is left untreated, there is a considerably increased risk of progressing to a form of dementia. Therefore, it is vital to pay attention to these early signs. There are two key points to emphasise: • If you or someone you know is experiencing some of the symptoms associated with mild cognitive impairment, regardless of age, it is important to consult a doctor. Taking this step could help prevent a condition that might otherwise affect your life and the lives of your loved ones. • Consider the following question: If the symptoms of natural ageing, Mild Cognitive Impairment, and dementia are so similar, is it accurate to describe dementia as simply a group of symptoms?.

[Virtual Presenter] Armed with what we have learnt so far, and your sparked curiosity, it is worth reflecting on the question: Is dementia best described as a group of symptoms, or as a collection of conditions? Our learning has shown that dementia is not a single disease. Instead, it serves as an umbrella term that encompasses a variety of neurodegenerative conditions. Each of these conditions has its own distinct causes, patterns of progression, and implications for treatment. While the symptoms of dementia, such as memory loss and impaired reasoning, may overlap with those seen in normal ageing and mild cognitive impairment, the underlying pathology and course of these conditions are different. Grouping these conditions solely by their symptom’s risks obscuring their individual differences, which in turn can lead to mismanagement. We have observed that signs like memory loss or difficulties with reasoning can occur in ageing, mild cognitive impairment, or dementia. However, the trajectory and the underlying damage associated with each are not the same. For instance, mild cognitive impairment may stabilise or even improve with appropriate intervention. Dementia, on the other hand, is characterised by progressive and irreversible changes within the brain. Ageing is a natural process, simply the act of getting older, and does not necessarily indicate disease. The reason dementia is more accurately understood as a group of conditions, rather than merely a group of symptoms, lies in the way we define, diagnose, and respond to it in medical, social, and emotional contexts. Recognising this distinction helps ensure that each individual receives care and support tailored to their specific needs, and that the underlying condition is properly managed. In summary, while symptoms may overlap, it is the differences between the underlying conditions that are most important in understanding, diagnosing, and treating dementia effectively..

[Virtual Presenter] Diagnosing dementia requires a thorough clinical evaluation that goes well beyond simply ticking off a list of symptoms. A full neurological work-up typically includes a detailed patient history, clinical assessment, neuroimaging, and an examination of the impact on daily functioning. This comprehensive approach is crucial. Diagnosing dementia is not a task that can be completed by a GP using a basic symptom checklist. This is because dementia represents more than just a collection of symptoms. No doctor or consultant should make a formal diagnosis of dementia without conducting a complete neurological assessment. The reasons for this careful process become clear when we consider real-life scenarios: • • Two individuals might both present with symptoms such as depression and balance problems. However, while one may be experiencing dementia associated with Parkinson’s disease, where both mood changes and motor symptoms like postural instability are common, the other could be experiencing cognitive difficulties related to grief, such as impaired concentration or memory lapses, alongside emotional distress. • Similarly, two women may both display severe mood swings. One could be living with frontotemporal dementia, whereas the other may be going through menopause. Although the symptoms in these cases may appear identical, their origins and likely progression differ significantly. For one person, symptoms might improve over time or be managed successfully; for the other, a gradual decline may be inevitable due to the underlying neurodegenerative process. Why Classification Matters? Referring to dementia as a group of conditions rather than a set of symptoms upholds both dignity and clinical accuracy. This distinction prevents all cognitive changes from being grouped into a single, stigmatising narrative, which can lead to misunderstanding and inappropriate care. Furthermore, recognising the diversity of dementia types enables more tailored support. For example, individuals with frontotemporal dementia may require different interventions and care compared to those living with vascular dementia. This personalised approach ensures that each person receives the most suitable support for their specific condition..

[Virtual Presenter] It is essential to get the definition of dementia right, as this is the point where emotional understanding and medical realities can diverge. Clearly distinguishing dementia as a group of conditions, rather than a single disorder or a list of symptoms, has far-reaching implications for individuals, their families, and the wider healthcare system. What would the benefits of distinguishing dementia as a group of Conditions be? • Earlier and More Accurate Intervention: By recognising dementia as a collection of distinct conditions, professionals can intervene earlier and with greater accuracy, leading to better outcomes for those affected. • Avoiding Over-Pathologising Natural Ageing: This distinction helps to prevent the unnecessary medicalisation of normal ageing processes, ensuring that only those who require support receive a diagnosis. • Fostering Hope and Adaptation in Mild Cognitive Impairment: An accurate definition provides space for hope and adaptation, particularly for individuals experiencing mild cognitive impairment, by allowing for a more nuanced approach to care and support. • Condition-Specific Support for Carers: It enables carers to access and utilise strategies tailored to the specific type of dementia their loved one is living with, improving the quality of care and support provided. • Reducing Stigma: By moving away from the notion of dementia as an insurmountable, monolithic condition, the stigma associated with it can be reduced, promoting understanding and empathy. Perhaps most importantly, defining dementia in this way honours the lived experiences of people affected. Their journey is shaped not solely by symptoms or medical diagnoses, but by the process of diagnosis itself, their capacity to adapt, and their advocacy efforts. Language, and the words we choose, play a crucial role in shaping perceptions and experiences. To emphasise this point: Language. And words. Matter!.

[Virtual Presenter] Strokes are classified into several types, each carrying distinct implications for the risk of developing dementia. Understanding these differences is crucial in assessing potential cognitive outcomes. Ischaemic strokes are the most prevalent form, occurring when a blood vessel supplying the brain becomes blocked. This blockage may result from a blood clot or the gradual accumulation of fatty deposits. If not swiftly resolved, the blockage can cause substantial brain damage due to prolonged deprivation of oxygen. As a result, affected areas of the brain may experience cell death, which can subsequently lead to cognitive decline. Haemorrhagic strokes arise when a blood vessel within the brain ruptures, resulting in bleeding either within or around the brain tissue. The pressure caused by this internal bleeding can damage brain cells and disrupt normal brain function. Such strokes tend to be particularly severe and may cause extensive brain damage, thereby increasing the likelihood of developing dementia. Lacunar strokes are smaller strokes that occur deep within the brain, typically affecting small blood vessels. Although each individual lacunar stroke may inflict only minor damage, their cumulative effect over time can be considerable. Multiple lacunar strokes are associated with the development of subcortical vascular dementia, which is characterised by progressive cognitive decline, difficulties with executive functions, and notable changes in mood and behaviour. While experiencing a single stroke can elevate the risk of dementia, the likelihood increases substantially with multiple strokes. Each subsequent stroke compounds the damage to the brain, resulting in a greater overall impact on cognitive function. The connection between strokes and dementia is intricate and multifaceted. Several factors contribute to this relationship, including the type, severity, and location of the stroke, as well as individual health and lifestyle. Following a stroke,some individuals experience cognitive challenges, known as post stroke cognitive impairment (P-S-C-I-). These difficulties may include problems with memory, attention, language, and executive functions. If such cognitive issues persist and do not resolve within a defined period, typically six months, the condition may be formally diagnosed as post stroke dementia. The brain possesses a degree of capacity for recovery and adaptation after a stroke, referred to as neuroplasticity. Rehabilitation strategies and cognitive therapies can support improvements in cognitive function and help mitigate the risk of dementia following a stroke. Nevertheless, the extent of recovery is influenced by factors such as the severity and location of the stroke, as well as the individual's general health and lifestyle choices..

[Virtual Presenter] Traumatic brain injury (T-B-I--) arises when an external force causes damage to the brain. Such injuries can result from incidents including falls, car accidents, sports related impacts, or assaults. The severity of T-B-I's varies, ranging from mild concussions to severe forms of brain damage. The association between T-B-I and an increased risk of developing dementia is now well established. Several key factors help to explain this connection: The risk of dementia rises in relation to both the severity and frequency of TBIs. While a single mild concussion may not substantially increase dementia risk, repeated mild T-B-I-s-, such as those often sustained by athletes in contact sports, can have a cumulative effect. In contrast, severe T-B-I's are more likely to result in notable brain damage and a higher risk of subsequent dementia. Chronic Traumatic Encephalopathy (C-T-E--) is a specific type of dementia resulting from multiple, repeated T-B-I-s-, typically due to repeated blows to the head. This condition is most commonly observed in athletes participating in contact sports such as football, boxing, rugby, and hockey. C-T-E is characterised by the build up of abnormal tau protein in the brain, which leads to cognitive decline, memory loss, changes in mood, and behavioural disturbances. Following a T-B-I--, a cascade of events may occur, resulting in ongoing brain cell death that can continue for months or even years after the initial injury. This persistent damage contributes further to the development of dementia. The inherent limitations in the brain's ability to repair itself mean that the initial injury can set off a chain reaction of neurodegeneration. T-B-I can provoke inflammation within the brain, resulting in the release of chemicals that are harmful to brain cells. This inflammation may persist long after the initial injury, thus playing a role in the development of dementia. Chronic inflammation is a common feature in many neurodegenerative conditions,including Alzheimer's disease. T-B-I's can interfere with the connections between neurons, undermining the brain's ability to communicate effectively. This disruption can cause cognitive impairments and further increase the risk of dementia. Additionally, the brain’s plasticity, its capacity to adapt and reorganise, may be compromised by repeated injuries, reducing its ability to recover. In summary, T-B-I's represent a significant risk factor for dementia due to the direct damage inflicted on brain cells, the cumulative effects of repeated injuries, and the ongoing processes of inflammation and neurodegeneration. Understanding these mechanisms is crucial for preventing and managing dementia in individuals with a history of TBIs. Early intervention, rehabilitation, and effective management are vital for addressing menopause, strokes, and brain injuries. Timely treatment of these risk factors is key to reducing the risk of dementia and improving outcomes for affected individuals. What do you know about delirium?.

[Audio] Delirium and dementia can often appear similar in their presentation, with both conditions sharing symptoms such as confusion, memory difficulties, and problems with thinking or concentration. This overlap can make it challenging to differentiate between the two, especially in clinical settings. Despite the similarities, there are crucial differences between delirium and dementia that must be recognised. Delirium is characterised by a sudden and severe change in mental status, which typically develops over a period of hours or days. It is usually triggered by an acute medical issue such as an infection, adverse reaction to medication, dehydration, or physical stress. The symptoms of delirium are often pronounced and occur abruptly. One of the most important aspects of delirium is that it is treatable. I f the underlying cause is identified and managed promptly, the symptoms of delirium can be reversed, allowing the individual to return to their previous level of functioning. For this reason, it is essential to seek immediate medical attention if delirium is suspected. Clinicians should always consider the possibility of delirium first when evaluating sudden cognitive changes. In contrast, dementia is a chronic and progressive disorder that develops gradually over several months or years. It involves a steady decline in cognitive abilities, which interferes with everyday activities and independence. As previously discussed, the symptoms of dementia differ in their gradual onset and persistent nature. It is vital not to assume that all cognitive changes are due to dementia, as they may instead be signs of delirium or another treatable condition. Misdiagnosing delirium as dementia can result in missed opportunities for effective treatment and recovery. Therefore, in cases of uncertainty regarding the cause of cognitive symptoms, it is important to seek medical advice and undertake appropriate investigations, such as urine and blood tests, to exclude other potential causes. In summary, while delirium and dementia may share some outward symptoms, they are fundamentally different conditions with distinct causes and management strategies. Recognising these differences and seeking medical guidance when in doubt is essential to ensure individuals receive appropriate care and treatment. The following section will illustrate these points with the story "The Shift in the Garden Room"..

[Audio] The shift in the garden room. A story about love, illness and attentive care. In the soft morning light filtering through the garden room, Margaret sat beside her husband, Harold, whose gaze drifted somewhere beyond the hydrangeas. His dementia had been a slow tide with gentle laps of forgetfulness, and moments of confusion, but this week felt different. He was agitated, barely sleeping, and now barely speaking. His eyes, once warm with recognition, seemed clouded with something else. Margaret, clutching a cup of untouched tea, whispered to herself, "Is this the dementia worsening… or something else?" Margeret called in Nurse Anna, a calm presence with sharp eyes and a gentle voice. Anna knelt beside Harold, speaking softly, checking his vitals, asking questions Margaret hadn't thought to ask. Within minutes, she turned to Margaret with quiet certainty. "He's showing signs of delirium," Anna said. "His temperature's elevated, and his urine test suggests a urinary tract infection. This isn't the dementia progressing, it's an acute episode, and we can treat it." Margaret's eyes welled with tears, not just from relief, but from the validation of her instincts. Harold wasn't slipping away faster than expected. He was still in there, just temporarily lost in a fog that could be lifted. As antibiotics were started and fluids given, Harold's eyes began to clear. By evening, he looked at Margaret and smiled faintly. "Hydrangeas," he murmured. "You planted those." She nodded, gripping his hand. "Yes, love. And you helped me dig the holes.".

[Audio] Diagnosing dementia is a considerable challenge due to the overlap in symptoms with other health conditions. It is rarely straightforward to identify a specific type of dementia, as the similarities with other medical issues often complicate the process. Medical professionals typically adopt a methodical approach, ruling out alternative causes before confirming a diagnosis of dementia. This systematic exclusion helps ensure that other treatable or reversible conditions are not overlooked. The path to a dementia diagnosis begins with a clinical consultation, usually with a general practitioner. During this appointment, symptoms and medical history are discussed in detail to build a comprehensive understanding of the individual's condition. If necessary, the GP may refer the person to specialists such as a mental health team, psychologist, neurologist, or psychiatrist for further assessment. Blood tests are conducted to eliminate other potential diagnoses and, where possible, to identify biomarkers that may indicate cognitive impairment. Alongside these laboratory investigations, cognitive and memory assessments are carried out using standardised tools. These evaluations focus on memory, attention, language, and problem-solving abilities, and are typically repeated two or three times over a period, generally by a psychologist, to observe any decline or progression. Advanced imaging techniques, including CT and MRI scans, are employed to detect structural changes in the brain, such as atrophy or tumours. Additionally, SPECT and PET scans are sometimes used to provide functional insights into cerebral blood flow and activity. The final diagnosis is determined by a specialist, usually a psychiatrist or neurologist, who reviews all clinical data to identify the specific type and stage of dementia. This comprehensive process is known as a full neurological work-up. In the UK, the timeframe for receiving a definitive dementia diagnosis typically ranges from one to four years. Seeking a diagnosis for dementia can be an emotionally intense and stressful experience for both the individual and their family. The uncertainty, fear, and anxiety associated with the possibility of dementia often lead to heightened emotions throughout the process. For the person undergoing assessment, the experience may be overwhelming. There can be feelings of fear about the future, anxiety about the tests and evaluations, and frustration at the changes in cognitive abilities. It is crucial for the person to be surrounded by a supportive environment where they feel listened to and understood. Family members may also grapple with a range of emotions, including worry, sadness, and sometimes denial. Accepting the reality of a possible dementia diagnosis, and its implications, is often one of the hardest emotional hurdles to overcome, and this acceptance can take time. Patience and empathy are essential qualities for family members during this period. Providing emotional support and reassurance helps their loved one feel secure and understood. Open communication is key; honest conversations about feelings and concerns can ease some of the stress and foster a supportive network. It is also beneficial for family members to educate themselves about dementia and the diagnostic process. A better understanding of what their loved one is experiencing enables more informed and effective support. Patience remains vital throughout the lengthy diagnostic process, which involves multiple tests and evaluations. There will inevitably be periods of uncertainty and frustration, so reducing stress for the individual wherever possible is important. This can make the experience more comfortable and positive for everyone involved. Allow me to illustrate these points with the story, "A Journey Through the Fog: Edward's Story"..

[Audio] A journey through the fog: Edward's story. Edward was 60, a retired architect with a quiet wit and a love for sketching buildings in his notebook. But lately, something felt off. He'd forget the names of familiar places, misplace his phone in the bread bin, and once, he got lost walking home from the park. His wife, Margaret, noticed first. She didn't panic, she smiled, reassured him, and gently suggested they visit the doctor. Their GP, Doctor Khan, welcomed them with warmth and patience. Edward tried to explain the fog in his thoughts, but words tangled. Margaret held his hand, her smile steady, though her eyes held worry. Dr. Khan listened carefully and recommended a series of tests, "just to understand what's going on," she said gently. At the clinic, nurse Sam chatted with Edward as he drew blood. Edward joked about being a "human pin cushion," and Sam chuckled. Margaret sat nearby, talking about their weekend plans to keep things light. The tests were quick, but the waiting felt long. The scans were intimidating. Edward lay still, staring at the ceiling, wondering what they might find. Margaret waited outside, knitting a scarf she never finished. When he emerged, she smiled and kissed his forehead. "You're brave," she whispered. This scan was more complex. The nurse explained everything slowly, with kindness. Edward nodded, though he didn't fully understand. Margaret stayed close, her presence a steady anchor. The scan revealed changes in blood flow, subtle but telling. The Cognitive and Memory Testing was difficult. Edward sat with a neuropsychologist named Dr. Patel. He struggled with the memory games, the puzzles, the questions. "I used to design buildings, why can't I do these?" he muttered, frustrated. Dr. Patel reassured him, noting his strengths and gently acknowledging the gaps. Margaret watched quietly, her smile now tinged with sadness. Back in Dr. Khan's office, the air felt heavier. She spoke gently: "Edward, the results suggest you have Lewy body dementia." Margaret squeezed Edward's hand. Edward blinked and said.. "So, it's not just forgetfulness then," he said softly with fear in his voice. "It's real." Dr. Khan explained the condition, the symptoms, and the path ahead. She handed them leaflets about Lewy body dementia and referred them to the local mental health services for support. "You're not alone in this," she said warmly. Outside the doctor's room, Edward and Margaret stood for a moment quietly in the corridor. Then the tears came, soft, shared, and full of love. They hugged tightly, kissed gently, and Margaret whispered, "We got this." Edward nodded, and with his voice barely audible whispered. "Together.".

[Audio] A question that is regularly asked is: What stage is my loved one in? Dementia progresses in different ways, and various models describe the stages in differing detail. Some outline 6, 8, 9, or even 12 stages. However, these more detailed frameworks can generally be grouped into three main stages: Early, Middle, and Palliative. This simplified breakdown helps to make sense of the overall progression of dementia and the significant features associated with each stage. It is important to note that we do not assign specific time periods to each stage. Why? Each type of dementia is unique, each person's experience is different, and the severity of the condition can vary greatly between individuals. Because of these variables, it is difficult to predict how quickly someone will progress through the stages. However, it is clinically proven that the middle stage is usually the longest. In the early stage, individuals may notice mild cognitive impairments that begin to affect everyday life. Symptoms at this stage can include memory lapses, trouble finding the right words, and difficulties with planning or organising tasks. Despite these changes, individuals are often still able to function independently and maintain their usual activities, though they may require some support. This is also the stage when a diagnosis is commonly made, and early intervention can help manage symptoms and enhance quality of life. The middle stage of dementia, which can last for several years, is the longest. During this period, cognitive decline becomes more noticeable, and individuals usually need more assistance with daily activities. Symptoms can include greater memory loss, confusion, difficulty recognising familiar people or places, and changes in behaviour or personality. Physical abilities may also diminish, causing problems with mobility and coordination. At this stage, caregivers play a crucial role in offering support and ensuring the individual's safety and well-being. The palliative stage, also referred to as the late or end stage, is marked by severe cognitive and physical deterioration. Individuals may lose the ability to communicate, fail to recognise loved ones, and lose control of bodily functions, making it impossible to perform basic daily activities. Many become bedridden and require continuous care. The focus at this stage is on providing comfort and upholding the person's dignity. Palliative care aims to manage symptoms, relieve pain, and offer emotional and spiritual support both to the individual and their family. Focusing too much on these stages can lead to paying more attention to the dementia itself rather than to the person who is experiencing it. It is vital to remember that everyone's journey is unique, and their experience of dementia will differ. That is why a person-centred approach is so important, one that prioritises the individual's needs, preferences, and overall well-being at every stage of the disease. This approach ensures that the person remains at the forefront of care and support, rather than being overshadowed by the diagnosis. In the following section, we will explore these three stages in more detail and discuss what happens to the brain during each phase. The explanation will be kept as simple as possible, both for clarity and to support your understanding. We will begin with the early stages of dementia..

[Virtual Presenter] During the early stage of dementia, significant changes begin to take place within the brain, affecting its ability to function effectively. While some suggest it might be possible to slow the progression at this point, there is no concrete evidence to support such claims. Nevertheless, if a strategy or activity brings comfort or a sense of purpose to the person living with dementia or their caregiver, and does not pose any risk, it can be worthwhile to try. Importantly, establishing a solid daily and weekly routine during this stage will provide valuable support as the condition develops. Several key biological processes contribute to the symptoms observed in the early stage: Neurons Start to Malfunction: Neurons, the brain’s communication cells, think of them as your brain’s mobile network, begin to show signs of dysfunction. Their reduced efficiency disrupts how the brain processes information. Signs of Inflammation: Inflammatory responses develop around neurons, meaning the brain’s immune system is activated. This reaction can cause additional harm to the neurons and further accelerate their decline. In simple terms, the body’s immune system starts attacking the brain. Amyloid Plaques Build Up: In conditions such as Alzheimer’s disease, abnormal protein deposits known as amyloid beta plaques form between neurons. These plaques disrupt the neurons’ ability to communicate, interfering with the brain’s signalling pathways. Picture this as dead spots in your brain’s mobile network, causing you to lose signal. Tau Tangles Form Inside neurons, another abnormal protein, tau, becomes tangled, blocking the transport of nutrients and other essentials. This leads to degeneration, much like potholes forming in the brain’s road networks and preventing the movement of vital substances. Reduced Blood Flow: In vascular dementia, and in the later stages of other types, blood flow to the brain decreases. Neurons are deprived of oxygen and glucose, both crucial for their survival and function.This deprivation can ultimately cause the neurons to die. These biological changes result in symptoms such as memory loss, language difficulties, and challenges with thinking and concentration. As the brain’s ability to function deteriorates, the groundwork is laid for the progression of the disease. At this stage, it is important to undertake future planning. This includes creating care plans, organising wills, setting up Legal Power of Attorney (for both care and financial matters), and ensuring financial support is in place. It is essential to remember that each type of dementia, and each individual affected, will experience these changes differently. The duration of this stage varies from person to person, making it difficult to predict when progression to the middle stage will occur. Above all, strive to focus on the individual, rather than solely on the deterioration caused by dementia. Each journey is unique and deserves personal attention and respect..

[Virtual Presenter] During the middle stage of dementia, the connections between neurons, called synapses, begin to deteriorate. These synapses are critical for communication between different regions of the brain, including those responsible for memory, judgement, and language. As synaptic breakdown occurs, the chemical signals exchanged between neurons become less effective, leading to increasing problems with thinking, remembering, and making decisions. To use a simple analogy: imagine the mobile network’s cell towers. Normally, these towers pass calls between each other until they reach your phone. In this stage of dementia, it is as if the cell towers themselves are breaking down, making it much harder for messages to get through. Metabolic Decline The brain’s ability to use glucose and oxygen, its primary sources of energy, declines in the middle stage. When neurons cannot get enough energy, they begin to die. For example, in Alzheimer’s disease, the brain’s uptake of glucose drops considerably, which has a major impact on its function overall. As these changes take hold, the brain becomes tired more quickly, leading to mental fatigue and an increased need for daytime naps. We will explore this aspect further in a later part of the training. Some researchers have referred to this pattern of metabolic decline as “diabetes type 3”, though whether this description is accurate is still under investigation. Structural Brain Changes Another significant development in the middle stage of dementia is the visible change in brain structure. The tissue of the brain begins to shrink, a process known as atrophy. The ventricles, which are the fluid filled spaces inside the brain, become enlarged, and the cortex (the outer layer responsible for many cognitive abilities) becomes thinner. In the case of vascular dementia, strokes can lead to localised loss of brain tissue (infarcts), and these areas of damage can build up over time. The combined effect of these changes is a worsening of dementia symptoms.Individuals may experience more pronounced memory loss, greater confusion, growing difficulty with language, and impaired judgement. The structure and function of the brain are now significantly compromised, making it increasingly challenging for people to carry out daily activities and maintain their independence. This middle stage is typically the longest phase of dementia, often lasting several years. As the difficulties faced by the person increase, the role and support of caregivers become ever more important. It is important to review and update future plans while the person still has the legal capacity to do so. This may include care arrangements, financial planning, and legal matters. Above all, it is essential to focus on the person rather than solely on the progression of their condition. Taking a person centred approach greatly contributes to reducing stress and promoting the individual’s well being and happiness..

[Virtual Presenter] This stage of dementia is often the most emotionally charged. The level of stress experienced can depend greatly on the extent of planning made for the future. Without adequate preparation, this phase can become particularly overwhelming for both the individual and their caregivers. Progression of Neuronal Loss As dementia advances, there is widespread death of neurons, which are the cells responsible for communication within the brain. This ongoing loss disrupts the brain’s intricate neural networks, similar to a mobile network developing increasing numbers of dead zones and losing signal. As these networks break down, the person’s ability to think, move, and communicate deteriorates further. Decline in Cognitive, Motor, and Communication Abilities The progressive destruction of neurons means that cognitive functions, motor skills, and communication abilities are all increasingly impaired. In particular, damage to the frontal lobes can affect emotional regulation and alter personality traits, making it harder for the person to express themselves or control their emotions. End Stage Changes and Loss of Essential Functions During the end stage of dementia, the brain may lose its capacity to regulate vital bodily functions such as swallowing, breathing, and heart rate. Individuals at this stage often become bedridden, may lose the ability to speak, and might no longer recognise those around them. This period is usually considered palliative, with care focused on comfort and preserving dignity. In the advanced stage, death frequently results from complications like infections (notably pneumonia), malnutrition, or organ failure. These arise due to the body’s reduced ability to coordinate essential systems as the brain’s control weakens. Caregivers often experience heightened emotions and stress during this stage. The gravity of the situation can feel overwhelming, particularly when faced with difficult decisions such as selecting a care home,arranging respite care, or addressing legal matters. It is crucial for caregivers to exercise patience and empathy towards both themselves and their loved ones. Open communication and seeking professional advice can provide valuable support in navigating these challenges. Remember, it is entirely appropriate to ask for help and to take breaks when necessary; looking after one’s own well being is vital to continuing to provide effective care. By focusing on the individual rather than just the disease, caregivers and families can ensure that dignity and comfort remain central to all care decisions during this difficult time. To further understand the impact of dementia, it is helpful to compare a healthy brain at the time of death with one affected by this condition. Such a comparison highlights the profound changes that occur as dementia progresses..

[Audio] The visual comparison between a healthy brain and one affected by dementia powerfully illustrates the extent to which the disease alters an individual's ability to maintain their sense of self and live fully during the late stage. Observing these changes can be deeply impactful, as the physical evidence demonstrates how dementia profoundly affects both cognitive and physical functioning. It is evident from the visual representation that dementia causes the brain to diminish drastically, with reductions in both size and weight that can approach nearly half compared to a healthy brain. This significant loss underscores the severity of the condition and helps explain many of the associated symptoms and challenges faced in the advanced stages. Taking time to closely examine the structure and changes of the brain provides a clearer understanding of dementia and its effects. This focus is essential for anyone involved in care, as it lays the groundwork for a more empathetic and informed approach. Throughout this training, there will be continuous opportunities to delve deeper into how dementia affects the brain. This ongoing focus is intentional and vital, as gaining insight into the person's experience is the foundation for providing compassionate and effective support, regardless of the stage of dementia. By concentrating on the person and striving to understand the changes occurring within their brain, caregivers can better support individuals living with dementia. This approach ensures that care remains sensitive and appropriate, tailored to each person's unique needs at any stage of their journey..

[Virtual Presenter] We have already mentioned some parts of the brain that are affected by this terrible disease. In earlier sections, we have spoken about the neurons, the ventricles, and the cortex. Now, we will look at additional areas of the brain that are impacted by dementia. If you are unfamiliar with these regions or unsure of their exact location, do not worry, throughout this training, we will explore each area in more detail, helping you build a clearer understanding as we progress. A healthy brain is divided into several distinct sections, each responsible for different functions. Working together, these areas provide us with our full cognitive capacity. The Temporal Lobe The temporal lobe plays a vital role in our ability to understand language, navigate our surroundings, and process memories. When functioning properly, it enables us to comprehend speech, recall past events, and find our way in different environments. The Frontal Lobe The frontal lobe is essential for planning, thinking, judgement, and managing emotions. It supports decision-making, problem-solving, and emotional regulation, allowing us to interact appropriately and thoughtfully with the world around us. The Occipital Lobe Responsible for vision, visual reception, and interpretation, the occipital lobe helps us process and make sense of what we see every day. The Parietal Lobe The parietal lobe, particularly its right side, is involved in spatial awareness, sensations such as touch, reading, orientation, and taste. It assists us in navigating our environment, experiencing physical sensations, and understanding spatial relationships. When the brain is healthy, all of these areas work together seamlessly, enabling us to function well in daily life. However, dementia disrupts this harmony, progressively affecting these regions and leading to a range of cognitive and behavioural changes. Let us now examine, using the same diagram, the changes that occur in the brain as a result of dementia, and how these changes impact a person both mentally and physically..

[Virtual Presenter] Once dementia affects the brain, its ability to function as it should becomes impaired. This decline leads to noticeable changes in a person’s movement, thinking, judgement, and speech. Even senses such as smell and taste may be altered, reflecting the wide reaching impact of dementia on various brain functions. By recalling the roles of each healthy brain region, we can better understand how dementia alters the brain and the effects this has on daily life. Temporal Lobe With dementia, the temporal lobe’s functions are compromised. This can cause misunderstandings in language, as well as a decline in memory. Individuals may find it difficult to form new memories and often struggle to recall past events. Frontal Lobe Damage to the frontal lobe as a result of dementia can lead to issues such as falls, misinterpreting situations, and poor judgement. Emotional changes are also common, with a person potentially shifting from being reasonable to becoming judgemental, or from passive to aggressive in their responses and behaviour. It is important to note that both the frontal and temporal lobes are frequently affected together, a combination seen in frontotemporal dementia. Occipital Lobe Dementia can hinder the occipital lobe’s role in visual interpretation. As a result, individuals may have difficulties processing and understanding visual information, which may affect their daily interactions with the world around them. Parietal Lobe The effects of dementia on the parietal lobe can include challenges with spatial awareness, sensations, reading, orientation, and taste. Such impairments may result in difficulties with balance and coordination, so that even someone who was previously active in sports may now struggle with these activities. Although these changes may present as physical problems, they are rooted in the brain's deterioration rather than a direct physical cause. The gradual decline in the brain’s ability to function leads to the various symptoms and challenges associated with dementia. However,it is important to remember not to attribute every change solely to dementia or the brain’s deterioration. Other health concerns could also be responsible for new or worsening symptoms. If there is any uncertainty, seeking a health check is always advisable. There is no reason to endure treatable symptoms without proper medical advice. To further illustrate these points, visual aids can be provided to clearly show what is happening within the brain as dementia progresses..

[Audio] Amyloid plaques are a notable feature in the progression of dementia-related conditions. In particular, in Alzheimer's disease, abnormal protein deposits known as amyloid-beta plaques accumulate between neurons. This build-up of plaques interrupts the communication between neurons, which in turn disrupts the brain's signalling pathways. To put it simply, the presence of amyloid plaques acts like creating 'dead spots' in the brain's own communication network, much like losing signal on a mobile phone. As a result, the brain's ability to transmit messages becomes increasingly impaired. This accumulation of plaques can be observed at every stage of disease progression, demonstrating how the brain's function is gradually affected over time. It is important to note that this phenomenon is not unique to Alzheimer's disease; other forms of dementia can also impact the brain in similar ways. For instance, frontotemporal dementia (FTD) is another condition that affects the brain, though the underlying mechanisms and types of protein build-up may differ. The key point remains that the build-up of abnormal proteins, such as amyloid plaques, can significantly disrupt brain function across various types of dementia..

[Audio] In frontotemporal dementia (FTD), distinctive changes occur within the neurons of the brain. One of the primary features is the formation of tau tangles. These tangles are made up of an abnormal version of the tau protein, which normally plays a role in maintaining the structure and function of neurons. As tau tangles develop inside the neurons, they interfere with the transport of nutrients and other essential substances. This disruption is akin to the brain's transport system, its road networks, developing large potholes, making it difficult for vital nutrients to move efficiently. Over time, this hinders the health of neurons and leads to their degeneration. Another key protein involved in frontotemporal dementia is TDP-43. Under normal conditions, TDP-43 helps regulate gene expression and supports the overall health of brain cells. However, when TDP-43 becomes abnormal, it disrupts the brain's ability to communicate and function properly. The result is a progressive cognitive decline, which is a hallmark of dementia. The mechanisms described above illustrate how abnormal proteins such as tau and TDP-43 can severely impact brain function in frontotemporal dementia. Should Lewy body and vascular dementia also be considered in this discussion?.

[Audio] Alpha-synuclein is a protein that is typically present in the brain under normal circumstances. However, in certain neurological conditions, this protein can become abnormal and start to clump together, forming distinctive structures known as Lewy bodies. These Lewy bodies are especially prevalent in the brains of individuals diagnosed with Lewy body dementia and Parkinson's disease. When alpha-synuclein proteins aggregate to form Lewy bodies, they disrupt the normal functioning of neurons, or brain cells. This interference with neuronal activity gives rise to a variety of symptoms. Among these are cognitive decline, movement difficulties, and issues with sleep. In the context of Lewy body dementia, the presence of Lewy bodies in the brain manifests as a specific set of symptoms. These include fluctuating attention and alertness, visual hallucinations, disturbances in rapid eye movement (REM) sleep, and parkinsonism, which is characterised by symptoms such as muscle rigidity and tremors. The abnormal deposits of alpha-synuclein within Lewy bodies hinder the brain's ability to communicate efficiently and function as it should. This interference underpins the cognitive and motor symptoms associated with Lewy body dementia. Ultimately, these deposits result in the degeneration and death of neurons, contributing to the progressive decline in brain function observed in this form of dementia..

[Audio] In vascular dementia, as well as in the later stages of other forms of dementia, the blood flow to the brain diminishes significantly. This reduction in blood supply means that neurons are deprived of the oxygen and glucose they need to survive and function properly. The absence of these vital nutrients places the neurons under considerable stress, ultimately causing them to die. This neuronal loss is a major contributor to the symptoms and progression of dementia. Several vascular risk factors increase the likelihood of strokes and, consequently, the risk of developing vascular dementia. These include hypertension, diabetes, high cholesterol, and smoking. Each of these factors can negatively impact blood vessels, leading to impaired blood flow and further jeopardising brain health. The visual aids that we have seen, can be particularly helpful in illustrating the mechanisms and factors that contribute to the spread of dementia. By examining these visual representations, it becomes easier to comprehend what some of the primary culprits behind dementia look like and how they affect the brain..

[Virtual Presenter] A part of the brain that often goes overlooked but is crucially affected in dementia is the brain stem. The impact on the brain stem typically occurs in the late stages of dementia or in rarer forms of the condition. The brain stem is situated at the base of the brain, where it meets the top of the spine. It plays a vital role in maintaining physical health by overseeing many of the body's automatic functions. These include breathing, heart rate, blood pressure, temperature regulation, digestion, and sleep. As dementia advances, particularly into its later stages or in rare types such as young onset dementia, the brain stem may become compromised. This can lead to a range of complications affecting several bodily functions: Temperature Regulation: The brain stem is responsible for maintaining a stable body temperature. When affected by dementia, this regulation can become impaired, resulting in episodes where individuals may feel excessively hot or cold. Muscle Movement and Control: The brain stem also controls muscle movement and coordination. As its function declines, individuals may struggle with balance, coordination, and movement. This increases the risk of falls and makes daily activities more challenging. Digestion: The regulation of the digestive system is another key role of the brain stem. Dementia related impairment can lead to difficulties such as swallowing problems, constipation, or changes in appetite, potentially resulting in malnutrition and dehydration if not carefully managed. Sleep: The brain stem helps to regulate normal sleep patterns. When affected by dementia, sleep disturbances may occur, including insomnia, excessive daytime sleepiness, or fragmented sleep. These issues can worsen cognitive decline and negatively impact overall quality of life. With progression of dementia and subsequent involvement of the brain stem, individuals often face significant challenges in temperature regulation, muscle control, digestion,and sleep maintenance. All these changes arise from the ongoing deterioration within the brain, underscoring the need for comprehensive care and support for those living with dementia. It is also important to remember that not all health concerns in a person with dementia should be attributed solely to the progression of the condition. For example, delirium has previously been discussed as another possible cause of sudden changes. For this reason, regular health checks at least once a year are essential in providing thorough care..

[Virtual Presenter] It is important not to use the term “dementia” as a blanket explanation for every change, struggle, or moment of distress that a person experiences. Although dementia does affect cognition and behaviour, it does not erase the individual’s entire health history. There are many treatable conditions, such as infections, pain, sensory loss, or side effects from medication, that can mimic or worsen the symptoms commonly associated with dementia. Relying solely on dementia as the explanation for all symptoms could mean missing opportunities to address issues that are actually treatable. As carers, it is crucial not to make assumptions about the cause of difficulties. Some practical approaches for carers: Do not assume: If someone is having trouble seeing clearly, the problem may be related to a decline in eyesight and could require assessment by an optometrist. Investigate physical causes: Struggles with walking may be the result of pain in the legs, rather than balance issues related to dementia. Monitor for treatable illnesses: Difficulties regulating body temperature could be due to an infection, such as a urinary tract infection, or a virus like a cold or the flu. These conditions can mimic or intensify dementia symptoms but can often be reversed if identified and managed promptly. For this reason, it is essential to rule out physiological concerns before attributing symptoms to the progression of dementia. Regular health checks, including vision and hearing tests, dental examinations, and blood tests, help to identify and address these issues early. Ensuring that individuals receive the appropriate treatment and support can improve their general well-being and quality of life. If you have good relationships with a GP, dentist, and optometrist, they should help schedule regular check-ups, ideally providing reminders every six months. However, these routine health checks should be completed at least once a year..

[Audio] When caring for someone with dementia, it is helpful to regularly reflect on certain questions to guide your approach and ensure that you are considering all possible factors affecting their well-being. some practical questions and tips for carers: Have there been any recent changes? Observe for any sudden or gradual changes in the person's behaviour, mood, or abilities. Identifying when these changes began can help determine whether they may be related to an underlying medical issue rather than dementia itself. Is there a possibility of pain or discomfort? Consider whether the person could be experiencing pain or physical discomfort. Sometimes, difficulties in communication mean that pain is not obvious, but it may still be impacting their mood or actions. When was the most recent medical evaluation? Reflect on the timing of their last health check. Regular medical evaluations are vital in identifying treatable conditions that could be contributing to any new or worsening symptoms. By systematically considering these questions, carers can help ensure that treatable issues are not overlooked and that the individual receives comprehensive care tailored to their needs..

[Audio] Shall we take a breather here to helps us understand that despite talking and learning about a terrible mental and medical condition, we are still talking about a person. As caregivers and clinicians, we must see the person in front of us. The person should always be more important than any diagnosis or medical condition. Why? Because at the heart of our caring, is a real person. A person who has feelings, dreams, ambitions, desires, and a life! Our care and empathy is so vital to them because it enables them enjoy their days and time with their loved ones. Remember to live, to love, and to build memories. Someone once said to me, "I may not remember their names or their faces, but I will remember the emotions they made me feel." Let me tell you a story entitled, "The Woman They Still Love", I think this will help you understand why seeing the person, and enabling that person, is important . Enjoy. Claire was 45. A vibrant woman with a laugh that filled rooms and a heart that never ran out of space. She was a full-time marketing manager, a devoted wife to James, and a mother to two children. Ella, 10, and Noah, 8. Her days were a whirlwind of school runs, client meetings, after school activities, and spontaneous dance parties in the kitchen. She made it all look effortless. James often said she was the glue that held their world together. But something began to shift. It started subtly with Claire forgetting appointments, snapping at James over small things, and withdrawing from family dinners. She stopped laughing. Her once warm eyes grew distant. The woman who used to sing in the car with Ella and Noah now sat silently, staring out the window. After months of confusion and worry, they received the diagnosis: frontotemporal dementia. A cruel condition that doesn't just steal memories. it reshapes personality. Claire had to leave her job. The vibrant woman James married fifteen years ago was still there in body, but her spirit flickered. She became withdrawn, sometimes angry without reason. She struggled to express herself and often seemed lost in her own home. Ella and Noah didn't understand. "Why doesn't Mummy want to play anymore?", "Why did she yell when I asked her about school?", they would ask. James tried to explain gently, "Mum's brain is changing and it's changing what she can manage to do. Despite these changes though, she still loves you both very much." They began to seek support by visiting specialists, joining a local dementia support group, and leaning on friends who understood. James juggled work, caregiving, and parenting with quiet strength. He cooked, cleaned, helped with homework, and sat beside Claire during her silent spells, holding her hand even when she didn't respond. There were still moments of connection. A smile when Noah showed her his drawing. A soft laugh when Ella played her favourite song. A quiet "thank you" whispered to James in the dark. They learned to cherish those moments. Weekends became slower, gentler. Walks in the park, movie nights with cuddles, baking sessions where Claire watched more than participated, but you could see she enjoyed being there with them all. The children, though confused, showed their mother unwavering love. They hugged her often, told her stories, and reminded her of who she was. James missed his wife, the woman who teased him about his cooking and danced barefoot in the garden. But he loved the woman she was now, too. Not because she was the same, but because she was still Claire. Still the mother of his children. Still the person he vowed to stand beside. And every night, as he tucked Ella and Noah into bed, he reminded them: "We're a team. We love mummy, and we'll walk through this all together.".

[Virtual Presenter] Dementia impacts even the most basic daily activities. Tasks that we have carried out countless times before can suddenly become difficult. These once-simple actions grow increasingly frustrating, and eventually, they may become impossible to complete independently. Something that feels easy today, almost automatic, could be the very same task that becomes a real struggle tomorrow. This unpredictability is at the heart of living with dementia. Take, for example, making a cup of coffee. It sounds simple enough, something you could do with your eyes closed, although that’s not really advised. Still, the point stands. This seemingly straightforward task actually relies on a great deal of cognitive ability and memory, even though we often perform it without a second thought. To illustrate these challenges, let us follow Harold’s story, “The Yellow Cup”. Afterwards, we will examine the process of making a coffee for someone living with dementia in more detail..

[Audio] Harold stood in the kitchen, bathed in the soft morning light that filtered through the lace curtains. The kettle hummed quietly, not yet boiling. Though not needed as the coffee sat ready made in the coffee pot, thanks to his loving wife earlier in the day. He rubbed his hands together, a familiar ritual, and looked around for his yellow cup, the one his wife, June, had given him on their anniversary years ago. It was his favourite. Bright. Cheerful. Easy to spot. It sat on the counter, right where it always did. But Harold was not having a good day and was confused, so today, it didn't feel familiar. Instead of his yellow mug, he reached for the coffee pot. The milk bottle was in his other hand. He frowned, hesitated, then poured the milk into the coffee pot. It didn't feel right, but the steps were slippery in his mind, like trying to hold water in his hands. The kettle clicked off. Steam curled into the air. Harold turned, searching for the sugar. It was in front of him, in its usual ceramic pot with the little blue flowers. But it might as well have been invisible. He opened a cupboard. Then another. His brow furrowed, lips pressed tight. He muttered to himself, "Where's that blasted sugar? "Minutes passed. The coffee now mixed with milk was cooling as it sat in the pot. But Harold didn't give up. He spotted the yellow cup again and this time, something clicked. He poured the coffee into it, "no need to add milk now" he thought, with a slight smile on his face, seeing the funny side of what he had done. The sugar pot caught his eye, finally, and he spooned in one, then two heaps. Stirred slowly. He took a sip. It wasn't perfect. A little too much sugar. But it was his. Made by his own hands. Harold sat at the kitchen table, the yellow cup warm between his palms. Outside, the birds sang. Inside, he smiled..

[Virtual Presenter] Can you imagine being in Harold's shoes? The frustration he felt as he struggled through making himself a cup of coffee was palpable. What was happening in Harold’s brain that made this simple task such a challenge? Let us examine this story together to gain a deeper understanding of what Harold’s brain was experiencing. Harold’s kitchen, once a familiar and comforting space, felt strangely unfamiliar today. The yellow cup, a symbol of routine and memory, sat in plain sight but did not register in Harold’s mind. This moment reflects the early erosion of recognition and spatial awareness, as if the mental map of his world had begun to fade at the edges. When Harold reached for the coffee pot and the milk, the sequence of his actions became muddled. Milk was poured into the pot instead of the cup. This was more than simple forgetfulness; it was a breakdown in procedural memory and executive function. The steps lingered somewhere in his mind, but the connections between them had frayed, much like neurons that were once tightly woven now drifting apart. The sugar pot, always kept in its usual spot, seemed to become invisible to Harold. He searched through cupboards, not out of poor eyesight but because his perception was compromised. The object existed, but his brain’s ability to locate and label it faltered. The neural pathways that had once lit up with certainty now flickered and dimmed. Despite these challenges, Harold persisted. He found the yellow cup again, and something clicked. This small yet profound moment mirrored the islands of clarity that still surfaced amid the fog. The smile he gave himself was not just about the coffee; it was about reclaiming control, however briefly. The birdsong outside continued, reminding Harold that life goes on. Although the coffee was a bit too sweet and the process disjointed, Harold succeeded. For him, this was a quiet triumph over the invisible forces reshaping his mind. Making a cup of coffee engages quite a bit of the brain.Let us take a closer look at why Harold was struggling, by examining the effects of dementia on the brain. Cerebral Atrophy in Dementia In dementia, cerebral atrophy results from the degeneration and loss of nerve cells, along with the disruption of neural connections, particularly in regions responsible for memory, language, and reasoning. This atrophy is much more severe than that seen in normal ageing, with the brain in advanced cases potentially losing up to half its weight. Nerve Cell Damage and Death Dementia, especially Alzheimer’s disease, is marked by the accumulation of abnormal proteins such as amyloid plaques and tau tangles. These interfere with neuronal function, disrupt communication between neurons, and ultimately lead to cell death and loss of brain tissue. Specific Brain Regions Affected The earliest changes typically occur in structures crucial for memory, including the hippocampus and entorhinal cortex. As the disease progresses, other areas such as the cerebral cortex, which governs language, reasoning, and social behaviour, also undergo significant atrophy. In frontotemporal dementia, the frontal and temporal lobes are especially vulnerable. For young onset dementia, this process often affects different parts of the brain first, with the hippocampus involved later. Clinical symptoms of dementia are closely linked to the regions of the brain affected. For example, damage to the left hemisphere can cause language deficits and impair semantic memory, while atrophy in specific language related areas may lead to aphasia, with difficulties in speech and language processing. Clarifying the Brain Regions Several brain areas have been mentioned. Let us now look at those regions a bit more closely to ensure everything is clear..

[Virtual Presenter] The entorhinal cortex plays a central role in the processes of memory encoding and retrieval. It acts by sending and receiving signals to and from the hippocampus, facilitating the consolidation of short-term memories into long-term storage. This function is vital for episodic memory, enabling us to recall specific events, places, and experiences. In addition to its involvement in memory, the entorhinal cortex is key to spatial navigation. Within this region are grid cells, which help the brain map out physical spaces and track movements. By working in tandem with the hippocampus, the entorhinal cortex creates internal maps of our environment, allowing us to navigate the world around us. Another essential function of the entorhinal cortex is sensory integration. It brings together input from various senses, forming coherent memory traces. In essence, it serves as a bridge between perception and memory. For example, this integration enables us to remember a face and associate it with a particular place. In Harold’s case, the entorhinal cortex was not effectively sending or receiving the signals required to comprehend the steps needed to make his cup of coffee. The Hippocampus The hippocampus, which is also found deep within the brain, can be thought of as the brain’s filing system, a place where all memories are stored. It is responsible for remembering things like where the car keys are, what one’s address is, the names of loved ones, and even how to make a cup of coffee. The main functions of the hippocampus include: Memory Formation: Converting short-term experiences into long-term memories. Spatial Navigation: Helping us understand our location and how to move around our environment. Contextual Awareness: Linking memories to time, place, and emotion to give them meaning. With this understanding, it becomes clear why Harold found it so frustrating when attempting to make a cup of coffee, the hippocampus was unable to help him recall the necessary steps. As emotions are also relevant, let us now consider which part of the brain is involved in this aspect: the amygdala..

[Virtual Presenter] The Amygdala is the part of the brain that shows why Harold got frustrated. The amygdala is a crucial part of the brain responsible for processing emotions. One of its main functions is to detect and respond to emotional stimuli, particularly those associated with fear and threat. When we encounter a dangerous or stressful situation, the amygdala triggers the fight or flight response, which leads to a rapid increase in heart rate, heightened adrenaline, and greater alertness. This immediate reaction prepares us to deal with potential danger effectively. Another key role of the amygdala is in emotional memory. It forms a link between our feelings and our memories, influencing how we respond to certain situations or recall specific events. For example, looking at a photograph may cause a flood of memories and emotions to return, whether those feelings are positive or negative. The amygdala is also essential for interpreting social cues, such as facial expressions, tone of voice, and the emotional context of interactions, which helps us navigate social situations. In everyday terms, the amygdala acts as our emotional radar, constantly scanning our environment for emotional significance. Music is a powerful tool in storing and recalling emotions and memories. The amygdala plays a significant role in connecting music to our emotions. This is why hearing a familiar song can trigger a strong emotional response, bringing back memories associated with that music. For instance, a calming song that is linked to happy memories can evoke feelings of contentment and joy. In Harold’s experience, the amygdala was involved in both negative and positive emotional reactions. He felt frustration when he struggled to make coffee but also experienced positive emotions when he was successful. Both the hippocampus and the amygdala are vital in understanding how dementia affects individuals. These areas are responsible for many of the changes seen in dementia, such as emotional instability,behavioural shifts, and difficulties with social connections. As these regions deteriorate, the person may struggle to manage their emotions and behaviour, leading to challenges for both themselves and their caregivers. Effectively managing these changes is essential for ensuring the safety and well being of people living with dementia, as well as supporting caregivers in providing person centred care. Understanding what is happening in the brain can help us tailor our care approaches and prepare for the emotional and behavioural challenges that may arise..

[Virtual Presenter] Throughout this module, we have clarified several important points about dementia. Firstly, dementia itself is not a disease, nor is it an inevitable part of the ageing process. There is currently no cure for dementia, and it should not be confused with other symptoms or conditions that may present similarly. We have established that dementia is best understood as an umbrella term that encompasses a variety of brain conditions, including diseases and brain related injuries. These conditions cause damage to nerves and brain cells, leading to their decline. Understanding dementia as a group of related conditions rather than simply a collection of symptoms is important. This approach supports dignity and accuracy, steering away from generalisations and fear based narratives about cognitive change. We have explored the many different types and sub types of dementia, as well as the importance of recognising the unique characteristics of each. This understanding is crucial for developing a person centred approach, enabling care to be tailored to the needs of each individual. The module covered various risk factors that can contribute to a dementia diagnosis. However, it is important to note that the presence of these risk factors does not guarantee a diagnosis of dementia, and it is never the fault of the individual if they are diagnosed. We discussed the importance of not attributing every health concern of a person living with dementia to the progression of the condition. Other health issues should be considered, particularly as the person may not always be able to communicate their pain or symptoms. Preventative health checks, including blood tests, general health assessments, eye check ups, and annual dental visits, are essential for maintaining overall well being. The module highlighted the emotional stress that a diagnosis of dementia can have on both the individual and their loved ones. It is crucial to allow time for acceptance and adjustment to the diagnosis. We examined how dementia affects the brain at different stages and how these changes impact the person's experiences.While understanding the stages can be helpful, it is more important to focus on caring for the person as an individual, responding to their needs as they present on any given day. The module discussed how even simple tasks, such as making a cup of coffee, can become challenging for someone with dementia. These challenges can affect a person's sense of belonging and trigger emotional responses such as frustration or anger. With a deeper understanding of dementia, you are now better prepared to care for someone living with the condition, in whatever form that care may take. Always remember to approach care as you would wish to be cared for yourself, prioritising the person and maintaining a person centred approach. In the next module, we will explore how stigma, bias, and myths influence our perceptions of dementia and the way care is provided..