Dementia is a term used to describe a group of progressive neurological disorders; it is an illness caused by brain damage. It can also be defined as a syndrome that occurs as a result of a brain disease that is usually chronic or progressive in nature. Dementia is a serious condition that currently has no cure, but there is hope. All over the world, research is being conducted to find new treatments and ways to slow the progression of the condition. Dementia can disrupt many aspects of a person’s life, making it difficult for them to function normally. Memory, concentration, thinking, judgement, behaviour, and other skills are just a few of the things that can be impacted by the condition. These deficits are frequently associated with changes in emotional control, social behaviour, or motivation.
More than 25,000 older black “ethnically diverse” people, formerly referred to as black and minority ethnic (BAME) people in the UK are living with dementia, caused in part by vascular risk factors such as hypertension, which is common in African-Caribbean and South Asian populations. Due to a lack of awareness and knowledge about dementia, “ethnically diverse” older people are often diagnosed at a later stage than other groups of people. As the number of older people from “ethnically diverse” groups grows, services must become more responsive to their needs and desires to engage with services to seek help at an early stage. This is why it is critical to learn more about the work that organisations like DECEW are doing in the communities.
It is important to note that awareness of dementia and dementia services is frequently lacking in “ethnically diverse” communities. One major issue is that some “ethnically diverse” communities may resist engaging with social and healthcare services because they fear discrimination or find services difficult to access. A delay in seeking help, on the other hand, may mean that the person does not contact services until the disease has progressed or the person or family is in crisis. There is evidence also that people from “ethnically diverse” communities are unsure where or how to find dementia information. This is exacerbated by language barriers, cognitive impairment, or a lack of online information available in ethnic languages. People may misinterpret dementia symptoms as normal ageing, and therefore fail or delay seeking available help. That is why it is critical to have access to many organisations such as DECEW, that can assist with system navigation.
From the perspective of caregivers, there is evidence that minority ethnic caregivers are more likely to be isolated too, from mainstream services. Some people may regard using a service as a source of shame because dementia is stigmatised in some cultures, and it may be viewed as a punishment for past transgressions, or a family member with dementia may jeopardise a young relative’s marriage prospects and many other kinds of beliefs.
Individuals and families from the “ethnically diverse” community, as well as staff who lack specific cultural knowledge, can benefit from the services of organisations such as DECEW to establish connections with culturally appropriate voluntary and community groups, as well as interpreters who can assist with communication with families. This will allow for the discussion of diagnosis and treatment options. There are examples of good practices in dementia care for “ethnically diverse” people, but expertise needs to be shared more widely across service providers.
Symptoms of Dementia
Stress, weariness, certain illnesses, and medications can all affect your memory. However, if you are getting increasingly forgetful, especially if you are over the age of 65, you should consult your doctor about the early symptoms of dementia. Dementia symptoms can include issues with:
Memory loss
Thinking speed
Mental sharpness and speed
Difficulties with language, such as using words incorrectly, or trouble speaking
Comprehension
Emotion
Movement, and
Difficulties doing daily tasks.
It is important to get a diagnosis
There is currently no cure for dementia, but an early diagnosis can halt the progression in some circumstances, allowing the person to preserve some mental function for longer. A diagnosis allows people with dementia to receive the appropriate therapy and support. It can also help them and those around them plan for the future and with treatment and support, many people with dementia can live active, and fulfilling lives.
Types of Dementia
There are well over 100 subtypes of dementia but the most common types of dementia are Alzheimer’s disease, Vascular dementia, Lewy Body dementia, Frontotemporal dementia, and Mixed dementia. It is estimated that 982,000 people in the UK are living with dementia, with this figure expected to rise to 1.4 million by 2040. The cost of dementia in the UK is expected to reach £42 billion by the end of 2024, rising to £90 billion by 2040. There are more than 25,000 people from the “ethnically diverse” people living with dementia in the UK. Currently, more than 55 million people are living with dementia around the world. This figure is expected to increase to 139 million by 2050. It is estimated that over 60% of people living with dementia around the world live in low-and middle-income countries. (Alzheimer’s Society, 2021).
Alzheimer’s disease is the most common type of dementia and is a result of damage to the brain cells. It is progressive, gets worse, and develops slowly making it difficult to recognise. Alzheimer’s disease affects 60-80% of those living with dementia. People get symptoms based on the parts of the brain affected by the disease. Alzheimer’s disease frequently affects the hippocampus in its early stages. This part of the brain is in charge of storing new memories. That is why memory issues are among the first indications of Alzheimer’s disease. Unusual Alzheimer’s disease symptoms can often begin with vision or language problems.
Signs; Memory loss, disorientation, confusion, personality changes, etc.
Symptoms; Decline in cognitive ability, insight, language, memory and spatial awareness.
Vascular Dementia is often caused by damage to blood vessels as a result of small strokes and the symptoms often vary depending on which part of the brain is affected. Blood vessel narrowing or blockage reduces blood flow and oxygen supply to the brain. It is important, however, to note that not everyone who has a stroke will go on to develop vascular dementia.
Signs; Changes in mood/behaviour.
Symptoms; Varies depending on area of the brain affected but this may also include memory loss and language difficulties.
Lewy Body Dementia is a result of an abnormal deposit of proteins in the nerve cells. It has symptoms similar to the Alzheimer’s and Parkinson’s diseases. It affects movements and control. Researchers do not yet fully understand why Lewy bodies appear, but this type of dementia is linked to low levels of important chemicals (acetylcholine and dopamine) that carry messages between nerve cells, resulting in a loss of nerve cell connections.
Signs: Tremor similar to those of Parkinson’s disease.
Symptoms: Hallucination, confusion, fainting and dysphasia (difficulty swallowing). This type of dementia affects more than 100,000 people in the UK.
Frontotemporal Dementia is caused by damage to the frontal and or the temporal lobes of the brain. It affects behaviour and personality. Frontotemporal dementia is caused by the accumulation of abnormal proteins inside nerve cells in the front and side areas of the brain, which disrupts communication between cells, reducing the amount of information sent around the brain and body and eventually causing the cells to die. This type of dementia can be found in younger people between the ages of 45 and 65 and is more likely to run in families than other more common causes of dementia.
Signs: Obsessive and repetitive behaviours and change in appetite.
Symptoms: Twitching, stiffness and slow movement.
Mixed Dementia is when more than one type of dementia occurs in the brain at the same time. Alzheimer’s disease (caused by abnormal proteins called plaques and tangles that destroy nerve cells in the brain) and blood vessel changes associated with vascular dementia are the most common types of dementia to occur concurrently. Several types of dementia, such as Alzheimer’s, vascular dementia, and dementia with Lewy bodies, can frequently coexist in the brain at the same time and it can be difficult to know how much each is contributing to a person’s problems with the diagnosis of dementia.
Few other types of dementia related diseases
Some rarer diseases and conditions can lead to dementia or dementia-like symptoms.
Creutzfeldt-Jakob Disease (CJD) is the most common human form of a group of rare, fatal brain disorders known as prion diseases.
Huntington’s Disease (HD) is a progressive neurological disorder caused by a faulty gene. This disease alters the central area of the brain, affecting movement, mood, and thinking abilities.
Normal Pressure Hydrocephalus (NPH) is a brain disorder in which excess cerebrospinal fluid (CSF) accumulates in the ventricles of the brain, causing problems with thinking and reasoning, difficulty walking, and bladder control.
Posterior Cortical Atrophy (PCA) is the gradual and progressive degeneration of the outer layer of the brain (the cortex) in the back of the head (posterior).
Parkinson’s Disease Dementia is a decline in thinking and reasoning that occurs in many Parkinson’s patients at least a year after diagnosis.
Korsakoff Syndrome is a chronic memory disorder caused by thiamine deficiency (vitamin B-1). Korsakoff syndrome is most commonly caused by alcohol abuse, but it can also be caused by other conditions.
Help is at hand
To learn more about dementia, please contact us at info@decew.co.uk. You can also inquire online by completing our short online enquiry form on our Services page, and we will contact you to answer your questions.
Other organisations that can help you understand dementia include the Alzheimer’s Society, the Alzheimer’s Association, Age UK, the National Health Service (NHS), Dementia Alliance International (DAI), Alzheimer’s Disease International (ADI), Alzheimer’s Europe, and Alzheimer’s Scotland. You can also ask your doctor or healthcare provider about local dementia organisations in your area.
Help scientists and researchers by taking part in clinical trials
There are many dementia research projects and clinical trials going on around the world. If you have dementia or are concerned about memory problems, or are worried about your loved one, you can help scientists learn more about the condition and explore potential treatments by participating in research and clinical trials. Carers can also participate in studies on the best ways to care for someone with dementia.
To find out more, email DECEW at info@decew.co.uk