Dementia: what it is and how to give you and your family the best chance of avoiding it. Presented by: Ethna Parker The information for this presentation was taken principally from the following websites: National Institute for Clinical Excellence (NICE) http://www.nice.org.uk/ The Alzheimer’s Research UK http://www.alzheimersresearchuk.org/ The Alzheimer’s Society http://alzheimers.org.uk/ The Department of Health http://www.dh.gov.uk A definition of dementia The term ‘dementia’ is used to describe a syndrome which may be caused by a number of illnesses in which there is progressive decline in multiple areas of function, including decline in memory, reasoning, communication skills and the ability to carry out daily activities. Alongside this decline, individuals may develop behavioural and psychological symptoms such as depression, psychosis, aggression and wandering, which cause problems in themselves, which complicate care, and which can occur at any stage of the illness. (DH, 2009) Living well with dementia. A national strategy, p15. It is estimated that dementia affects 840,000 people in the UK. However, it is likely that the actual figure is much higher as only 31% of people with dementia are registered on GP lists. Some fact and figures about dementia The proportion of deaths attributable to dementia increases steadily from 2% at age 65 to a peak of 18% at age 85–89 in men, and from 1% at age 65 to a peak of 23% at age 85–89 in women. Overall, 10% of deaths in men over 65 years, and 15% of deaths in women over 65 years may be attributable to dementia. The majority of these deaths occurred among those aged 80–95 years. Delaying the onset of dementia by five years would halve the number of UK deaths due to dementia to 30,000 a year. Alzheimer’s Society (2007), Dementia UK Which % range do you want to be in? 10% or 90% 15% or 85% Every year… • 59,685 people die earlier than they should because they have dementia. The National Dementia Strategy hopes to half that number. But, even half that number is still equivalent to a near capacity stadium at the Boro. The Boro vs Steaua Bucharest 2006, in front of a capacity crowd of 35,100 The economic cost of dementia is calculated at £23 billion every year. Over 55% (£12 billion) of these total costs was due to informal care, representing 1.5 billion hours of unpaid care provided by relatives and friends of people dementia with dementia. Dementia 2010 by Alzheimer’s Research UK Prevalence in the UK Alzheimer’s Society (2007), Dementia UK, p3. Alzheimer’s Society (2007), Dementia UK, p4. Some possible causes of dementia • Medical conditions such as strokes • Poor nutrition, dehydration, and certain substances, including drugs and alcohol. • Single trauma or repeated injuries to the brain. • Infection, illness or disease that affects the central nervous system, including Creutzfeldt Jakob Disease (CJD) and HIV. Pseudo dementia Some conditions have the signs and symptoms of dementia but are treatable, for example: Liver or kidney disease Depression induced pseudodementia Operable brain tumors Severe vitamin deficiencies (B12) Extremely underactive thyroid – however, needs to be treated in the first two years • Delirium • • • • • Alzheimer’s disease Alzheimer’s is the most common type of dementia and affects 60% of people diagnosed with dementia. Common symptoms of mild Alzheimer's disease include: • • • • Confusion Poor memory and forgetfulness Mood swings Speech problems As Alzheimer's disease develops into the moderate stage, it can also cause: • Hallucinations: where you hear or see things that are not there • Delusions: where you believe things that are untrue • Obsessive or repetitive behaviour • A belief that you have done or experienced something that never happened • Disturbed sleep • Incontinence: where you unintentionally pass urine (urinary incontinence) or stools (faecal or bowel incontinence) As Alzheimer's disease becomes severe, it can also cause a number of other symptoms such as: • More frequent hallucinations and delusions. • Difficulty swallowing. • Difficulty changing position or moving from place to place without assistance. • Weight loss or a loss of appetite. • Increased vulnerability to infection. • Complete loss of short-term and long-term memory. Vascular dementia Vascular dementia is the second most common type of dementia. There are two main types of vascular dementia: one caused by stroke and one caused by small vessel disease. A third type is a mixture of the two. There are many variations of vascular dementia. http://alzheimers.org.uk Vascular dementia Small vessel disease-related dementia This type of dementia, also known as sub-cortical vascular dementia or, in a severe form, Binswanger's disease, is caused by damage to tiny blood vessels that lie deep in the brain. The symptoms develop more gradually and are often accompanied by walking problems. http://alzheimers.org.uk Vascular dementia The symptoms of vascular dementia can develop suddenly and quickly worsen, or they can develop gradually over many months. Symptoms include: • Increasing difficulties with tasks and activities that require concentration and planning • Memory loss • Depression • Changes in personality and mood http://alzheimers.org.uk Vascular dementia Periods of mental confusion Low attention span Urinary incontinence Stroke-like symptoms, such as muscle weakness or paralysis on one side of the body • Visual hallucinations • Wandering during the night • Slow and unsteady gait (the way that you walk) • • • • http://alzheimers.org.uk Certain factors can increase a person's risk of developing vascular dementia. These include: • A medical history of stroke, high blood pressure, high cholesterol, diabetes (particularly type II), heart problems, or sleep apnea (where breathing stops during sleep). • A lack of physical activity, drinking more than recommended levels of alcohol, smoking, eating a fatty diet, or leaving conditions such as high blood pressure or diabetes untreated. • A family history of stroke or vascular dementia. • An Indian, Bangladeshi, Pakistani, Sri Lankan or African-Caribbean ethnic background. http://alzheimers.org.uk Always consult a doctor if you experience any sudden symptoms, such as slurred speech, weakness on one side of the body, or blurred vision - even if they are only temporary. These episodes may be caused by temporary interruptions in the blood supply within the brain, known as transient ischaemic attacks (TIAs). If left untreated, they can lead to permanent damage. Fronto-temporal dementia Fronto-temporal dementia is caused by damage to the parts of the brain that help control emotional responses and behaviour. Therefore, many of the initial symptoms of frontotemporal dementia involve changes in emotion, personality and behaviour. Symptoms may include: Fronto-temporal dementia • People may become less sensitive to other people’s emotions. This can make them seem cold and unfeeling. • They may also lose some of their inhibitions. This could lead to strange behaviour, such as making sexually suggestive gestures in a public place, being rude to others or making tactless comments. • Aggression • Compulsive behaviour • Being easily distracted • An increasing lack of interest in washing themselves • Personality changes: person who was previously withdrawn may become very outgoing or vice versa. Dementia with Lewy bodies The symptoms of dementia with Lewy bodies usually develop gradually but get more severe over the course of many years. Symptoms include: • • • • • • • • • • • • Memory loss Low attention span Visual hallucinations Periods of mental confusion Delusions Difficulty planning ahead Muscle stiffness Slower movement Shaking and trembling of arms and legs Shuffling while walking Problems sleeping Loss of facial expression. Mixed dementias Mixed dementia is a condition in which Alzheimer's disease and vascular dementia occur at the same time. Many experts believe mixed dementia occurs more often than was previously realized and that it becomes increasingly common in advanced age. Dementia or memory drugs The National Institute for Clinical Excellence (NICE) has published new guidance on the availability of Alzheimer's drugs on the NHS in England and Wales. These are drugs that are licensed to treat Alzheimer's disease, but not other forms of dementia. Donepezil (Aricept) galantamine (Reminyl) and rivastigmine (Exelon)are now recommended as options for managing mild as well as moderate Alzheimer’s disease. Memantine (Ebixa) is now recommended as an option for managing moderate Alzheimer’s disease for people who cannot take AChE inhibitors, and as an option for managing severe Alzheimer’s disease. http://www.nice.org.uk Can I protect myself from dementia? YES and NO Because we are not totally sure what causes dementia, it is not possible to state with absolute certainty what you can do to avoid it…BUT! We know that some things are RELATED in some way to the onset of dementia…so here are some pointers for protecting yourself. Physical activity Do some regular aerobic activity like: • Running, walking, or bicycling, which require oxygen to produce energy. Anything that gets you slightly out of breath is good. • Pick activities you like and do them regularly for at least 30 minutes a day. Weight control People who are obese in midlife have a threefold increased risk of developing Alzheimer's, and those who are overweight (considered a BMI between 25 and 30) have a twofold increased risk. This could be due partly to the fact that with added pounds, fat gets deposited in the brain and narrows the blood vessels that deliver fuel. Over the long term, brain cells die and vital connections and volume are lost. The Mediterranean diet • Increase fruit & veg • Decrease animal-based protein • Eat more oily fish • Eat raw nuts every day • Oven bake, steam or dry fry • Switch to olive or rapeseed oil and use sparingly • Drink less alcohol and fizzy pop • Less processed foods Work those grey cells… Did you know that with continued learning you can generate new brain cells? Here’s how to… • Go back to school • Take up a new hobby • Train that brain with regular ‘brainastics’ e.g. do games that test your memory, creativity and speed of reflex* • Join a debating club, use your local library, volunteer for something, read ‘War and Peace’ • Karaoke…no kidding, singing is good for you! *http://www.brainmetrix.com/ Being sociable is good for you…even baboons know it! Be happy ☺ People who have lots of friends showed less cognitive decline than those with fewer friends, even though they had the same number of plagues and tangles associated with Alzheimer’s disease. Too much stress over the long term significantly raises a person's risk of developing Alzheimer's. Managing long-term conditions There are around 15 million people in England with at least one long term condition. Numbers are expected to increase, in particular those with two or more conditions. • • • • • • • • • Asthma Diabetes* Joint disorders High blood pressure* Coronary heart disease (CHD)*, Chronic obstructive pulmonary disease (COPD) Cancer HIV/AIDS Mental health problems *Strong association with Alzheimer’s disease and/or vascular dementia In a nutshell then… • Challenge your MIND • Be HAPPY • Make FRIENDS • Give your BODY what it really needs • Get MOVING! What to do if you think someone you know has dementia Make an appointment with your GP and discuss the signs and symptoms you are worried about. Ask for a full physical examination and blood tests. This will help to rule out other other medical conditions. Ask to be referred to your local Community Mental Health Team (CMHT) for older people for assessment. This is important even if you are worried about someone who is younger than 65. The Consultant will take details of the person’s medical history, results from their blood-work and physical examinations and decide whether or not to do an MRI scan. The Consultant may also perform a cognitive assessment using the Mini-mental state (MMSE) At this point the doctor will decide what the best treatment options are, e.g. drug therapy and/or psychological counseling. He/she may also make a referral to a Social Worker, Occupational Therapist or Speech & Language Therapist and/or a Physiotherapist. If prescribed memory drugs, a memory nurse will monitor the person’s progress every 3 -6 months and feed back relevant information to the Consultant. Do not rely on GPs having the skills to recognise early signs of dementia. If you are concerned, insist on an early referral to the CMHT. Recommended reading Rare dementias • Pick’s disease is a rare form of dementia that is similar to Alzheimer's disease, except that it tends to affect only certain areas of the brain. • Binswanger's disease is a rare form of vascular dementia in which damage occurs to the blood vessels in the deep white matter of the brain. • Huntington's disease is a progressive hereditary disease. It usually becomes apparent in adults in their 30s, although it can occur earlier or later. There is also a juvenile type of Huntington's, which affects children. The course of the disease varies for each person, and dementia can occur at any stage of the illness. • Korsakoff's syndrome may result from continual heavy drinking over a long period. It is caused by lack of thiamine (vitamin B1). This may be due to poor nutrition, poor absorption of vitamins resulting from the effects of alcohol on the stomach lining, or both. Rare dementias • Niemann-Pick disease type C is one of a group of rare inherited disorders. It mainly affects school-age children but can occur at any time, from early infancy to adulthood. It is caused by the inability of the body to deal with cholesterol, and leads to progressive loss of movement and difficulties with walking and swallowing. • Normal pressure hydrocephalus (NPH) occurs when an obstruction in the normal flow of spinal fluid causes pressure to build up in the tissues of the brain. Symptoms include difficulties with walking, dementia and urinary incontinence. People who have had a history of meningitis, encephalitis or head injury are more likely to develop NPH. The condition is sometimes treatable. • People with Parkinson's disease have a higher-thanaverage risk of developing dementia, although the majority remain unaffected. Symptoms of dementia associated with Parkinson's disease vary from person to person. Rare dementias • This is a group of rare diseases in which a transmissible agent known as 'prion protein' accumulates in the brain. This causes dementia and neurological symptoms including unsteadiness and jerky movements. Different prion diseases occur in humans and animals. One of these, Creutzfeldt-Jakob disease (CJD), has been identified for some time in a small number of humans. More recently, a new form of CJD, known as variant CJD, has been identified. • Progressive supranuclear palsy (PSP) is a comparatively rare progressive condition, sometimes known as SteeleRichardson-Osliewski syndrome. It affects the brain stem and adjacent areas, and some of its early symptoms resemble those of Parkinson's disease. Rare dementias • A grossly underactive thyroid gland (hypothyroidism) can lead to the symptoms of dementia. Simple tests can detect this condition. The symptoms include loss of interest, apathy, slowing down of mental abilities and poor short-term memory. Treatment involves replacing the naturally occurring thyroid hormones with synthetic hormone preparations. This is more likely to be effective in reversing the dementia if the problem is identified and treated within two years of its onset. • Severe vitamin B12 deficiency can cause a dementia along with weakness, unsteadiness and visual problems. It may be caused by pernicious anaemia or conditions causing very severe problems of absorption of vitamins from the bowel. It can be detected by blood testing but nowadays in the developed world the underlying cause is usually recognised long before dementia begins. All information on rare dementias was taken from http://alzheimers.org.uk Hot off the press! A new study by researchers at the University of California, San Francisco, has concluded that up to half of Alzheimer’s cases worldwide and in the US may be attributable to seven risk factors that are potentially preventable through simple lifestyle changes, such as exercising, using your brain, quitting smoking and losing weight. The new study, by Dr Deborah E Barnes PhD and colleagues at the University of California, San Francisco, is published online in the July 19, 2011 issue of The Lancet Neurology, a British medical journal. It was presented on July 19 at the Alzheimer’s Association International Conference in Paris. The seven risk factors The seven risk factors isolated by the researchers include: • Physical inactivity • Cognitive Inactivity or Low Educational Attainment • Smoking • Mid-life Obesity • Mid-life High Blood Pressure • Diabetes • Depression Hot off the press! Currently the diagnosis of Alzheimer’s follows the sequence of family history, information, mental assessment and the physical exam, focusing on neurological signs. Research labs have developed a new diagnostic tool for Alzheimer’s disease based on a blood test, the first of its kind. Previously, there was no definitive way to diagnose the disease during life. The new technique may have important implications for the ability to begin treatment early. Rammouza, G., Lecanua, L., Aisen, P. and Papadopoulos, V. (2011) A Lead Study on Oxidative Stress-Mediated Dehydroepiandrosterone Formation in Serum: The Biochemical Basis for a Diagnosis of Alzheimer’s Disease. Journal of Alzheimer’s Disease 24 (2011) 5–16. Hot off the press! An existing anti-seizure drug improves memory and brain function in adults with a form of cognitive impairment that often leads to full-blown Alzheimer’s disease, a Johns Hopkins University study has found. The findings raise the possibility that doctors will someday be able to use the drug, levetiracetam, already approved for use in epilepsy patients, to slow the abnormal loss of brain function in some aging patients before their condition becomes Alzheimer’s. The researchers emphasize, however, that more studies are necessary before any such recommendation can be made to doctors and patients. The new study, presented July 20th 2011 at the International Congress on Alzheimer’s Disease in Paris, also shows that excess brain activity in patients with a condition known as amnestic mild cognitive impairment, or aMCI, contributes to brain dysfunction that underlies memory loss. Previously, it had been thought that this hyperactivity was the brain’s attempt to “make up” for weakness in its ability to form new memories. http://gazette.jhu.edu/2011/07/20/drug-improves-brain-function-in-condition-that-leads-toalzheimers/ Hot off the press! Scientists have determined a molecular link between chronic stress and the progression of Alzheimer’s disease. A newly published study has found that in a mouse model, stress changes the levels of a certain protein that regulates the connections between brain cells, and whose malfunction is linked to Alzheimer’s. Chronic stress has long been linked with neurodegeneration. Scientists at USC now think they may know why. The study, which has tremendous implications for understanding and treating Alzheimer’s disease, was published in the June 2011 issue of The FASEB Journal (the Journal of the Federation of American Societies for Experimental Biology). Researchers examined the brains of rats that had experienced psychological stresses and found high levels of the RCAN1 gene. Davies and his colleagues suggest that chronic stress — physical or mental — causes overexpression of RCAN1, in turn leading to neurodegenerative disease. Hot off the press! Treating a mouse model of Alzheimer’s disease with an extract of cinnamon is effective at slowing disease progression, new research suggests. Scientists have found that a particular compound found in the spice also has antiviral properties. An extract found in cinnamon bark, called CEppt, contains properties that can inhibit the development of the disease, according to Prof. Michael Ovadia of the Department of Zoology at Tel Aviv University. His research, conducted in collaboration with Prof. Ehud Gazit, Prof. Daniel Segal and Dr. Dan Frenkel, was recently published in the journal PLoS ONE. “The discovery is extremely exciting. While there are companies developing synthetic AD inhibiting substances, our extract would not be a drug with side effects, but a safe, natural substance that human beings have been consuming for millennia,” says Prof. Ovadia. Though it can’t yet be used to fight Alzheimer’s, cinnamon still has its therapeutic benefits — it can also prevent viral infections when sprinkled into your morning tea. Hot off the press! Scientists at the Gladstone Institutes have identified a drug candidate that diminishes the effects of both Alzheimer’s disease and Huntington’s disease in animal models, offering new hope for patients who currently lack any medications to halt the progression of these two debilitating illnesses. In mice modeling Alzheimer’s disease, the novel compound prevented memory deficits and the loss of synaptic connections between brain cells—both of which are key features of the human disease. In mice modeling Huntington’s disease, JM6 prevented brain inflammation and the loss of synaptic connections between brain cells, while also extending lifespan. http://www.gladstone.ucsf.edu/gladstone/site/publicaffairs/ Hot off the press! A yet unidentified component of coffee interacts with the beverage's caffeine, which could be a surprising reason why daily coffee intake protects against Alzheimer's disease. A new Alzheimer's mouse study by researchers at the University of South Florida found that this interaction boosts blood levels of a critical growth factor that seems to fight off the Alzheimer's disease process. Chuanhai Cao, Li Wang, Xiaoyang Lin, Malgorzata Mamcarz, Chi Zhang, Ge Bai, Jasson Nong, Sam Sussman and Gary Arendash. Caffeine Synergizes with Another Coffee Component to Increase Plasma GCSF: Linkage to Cognitive Benefits in Alzheimer's Mice. Journal of Alzheimer's Disease, 25(2), June 28, 2011 Hot off the press! Researchers have identified a gene that appears to increase a person’s risk of developing late-onset Alzheimer’s disease, the most common type of the disease. Abbreviated MTHFD1L, a gene on chromosome six, was identified in a genome-wide association study by a team of researchers led by Margaret PericakVance. Naj AC, Beecham GW, Martin ER, Gallins PJ, Powell EH, et al. (2010) Dementia Revealed: Novel Chromosome 6 Locus for Late-Onset Alzheimer Disease Provides Genetic Evidence for Folate-Pathway Abnormalities. PLoS Genet 6(9): e1001130. doi:10.1371/journal.pgen.1001130 Some further resources and useful references Age Concern (2004) How ageist is Britain? London: Age Concern, p7. Alzheimer’s Society (2007) Dementia UK. A report into the prevalence and cost of dementia. London: Alzheimer’s Society. Audit Commission (2000) Forget me not. Developing mental health services for people in England. London: Audit Commission. http://www.auditcommission.gov.uk/SiteCollectionDocuments/AuditCommissionReports/NationalStudies/ForgetM eNot.pdf Department of Health (2007) The NHS in England: the Operating Framework for 2008/09. London: DH. Department of Health (2009) Living well with dementia: a National Dementia Strategy. DH: London. Feb 2009. Download from: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidanc e/DH_094058 Department of Health (2009) Living well with dementia: a National Dementia Strategy implementation plan. DH: London. July 2009. Download from: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidanc e/DH_103137 Great Britain. The Mental Capacity Act 2005: Elizabeth II. Chapter 9. (2005) London: The Stationery Office. http://opsi.gov.uk/acts/acts2005/ukpga_20050009_en_1 National Institute for Health and Clinical Excellence/Social Care Institute for Excellence (2006) Dementia Supporting people with dementia and their carers in health and social care. NICE/SCIE: London. The British Psychological Society (2007) Dementia. The NICE/SCIE guideline on supporting people with dementia and their carers in health and social care. The British Psychological Society and Gaskell: London. Download from: http://www.nice.org.uk/nicemedia/pdf/CG42Dementiafinal.pdf Dementia Quiz – info http://yourtotalhealth.ivillage.com/alzheimers-dementiaquiz.html Dementia Test – fun http://www.begent.org/dementia.htm The five-minute Alzheimer's Test - http://extras.timesonline.co.uk/pdfs/al.pdf http://www.memories-matter.org/ Sheard, D.M. (2009) Our emotions at work in dementia care. London: Alzheimer's Society Alzheimer’s Society (2002) Yesterday, today, tomorrow: Providing quality dementia Care manual, http://www.alzheimers.org.uk/ Alzheimer’s Society (2004), Policy Positions: Demography, http://www.alzheimers.org.uk/News_and_Campaigns/Policy_Watch/demography. htm Jones, D.W. (2002) Coping with stigma: the significance of shame and identity, In Myths, Madness and the family. Hampshire: Macmillan Keady, J. and Ashton, P. (2004) The older person with dementia or other mental health problems, In Norman, I. and Ryrie, I. (Eds) The art and science of mental health nursing, Berkshire: Open University Press Kitwood, T (1997) Dementia reconsidered, Buckingham: Open University Press. Matthews F.E., and Dening, T (2002) Prevalence of dementia in institutional care, The Lancet, 360, (9328), pp.225-226. Useful references on learning disability and dementia Cooper, S. A. (1997) High prevalence of dementia amongst people with learning disabilities not attributed to Down's syndrome. Psychological Medicine, 27, pp609-616. Lund, J. (1985) The prevalence of psychiatric morbidity in mentally retarded adults. Acta Psychiatrica Scandinavica, 72, pp563-570. Moss, S. and Patel, P. (1993) The prevalence of mental illness in people with intellectual disability over 50 years of age, and the diagnostic importance of information from carers. The Irish Journal of Psychology, 14, pp110-129. Prasher, V.P. (1995) Age specific prevalence, thyroid dysfunction and depressive symptomatology in adults with Down's syndrome and dementia. International Journal of Geriatric Psychiatry, 10, pp25-31.
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