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Dementia Awareness

Introduction In February 2009 the Department of Health published the first ever National Dementia Strategy. Within the strategy are 17 key objectives designed to: Make the lives of people with dementia, their carers and families better and more fulfilled (Do. H 2009). Objective 13 calls for an informed workforce for people working with dementia. This is to be achieved by effective basic training and continuous professional and vocational development in dementia care. As part of SEPT’s Workforce and Development strategy to support this document, a series of e -Learning modules have been created for all staff involved in health and social care in older people services including primary, secondary and tertiary care pathways providers. Throughout this course there are webpages that offers further help please note these down for future use as links within the course are not active The 17 key objectives act as common themes throughout the programme. To view this document go to : http: //www. dh. gov. uk/health/category/policy-areas/social-care/dementia/

Module Key Points This module should take learners up to 45 minutes to complete. On completion of this module learners should be able to: 1. Understand the definition of dementia 2. Gain an awareness of incident rates in the UK 3. Indentify the most common types and causes of dementia 4. Gain an awareness of signs and symptoms of dementia 5. Recognise the difference between dementia, depression and confused states Please note it may be useful to make notes during the training.

Prevalence & Projected Impact Prevalence Key data for the UK as a whole includes the following: 1. More than 750, 000 people in the UK are affected by dementia 2. It affects one person in six over 80 (late onset) 3. One in 14 over 65 (early onset) 4. Dementia is predominantly a disorder of later life, but there at least 15, 000 people who have young onset dementia 5. Approximately two women for every man is affected 6. It is estimated that there are 11390 people from Black minority ethnic groups (BME) with dementia. Its note worthy that 6. 1% of all people with dementia among BME groups is young onset, compared to 2. 2% for the UK population as a whole. Further information and fact sheets on dementia can be downloaded from; http: //www. alzheimers. org. uk/site/scripts/documents_info. php? document. ID=164

Projected Impact Ø The total number of people with dementia in the UK is forecast to increase to approximately 950, 000 by 2021 Ø Increasing to 1, 735. 000 by 2051 Ø An increase of 38% over the next 15 years and 154% over the next 45 years Information taken from Dementia UK: the full report (Knapp, Albanese et al 2007) To view copies of the full report go to www. alzheimers. org. uk.

What is Dementia? The Department of Health (2009) defines the term “dementia” as a syndrome which may be caused by a number of illnesses in which there is a progressive decline in multiple areas of function. Dementia is not a part of the normal ageing process. In essence dementia is a term used to describe a collection of symptoms which for most people are progressive and irreversible. This means the dementia usually gets worse slowly and often over a period of years, meaning that in most cases, the person with dementia can no longer live independently. This can have a profound affect on both the person with dementia and their carers. Additionally, there are different causes of dementia and this will have a direct impact upon the experience of the illness which the person with dementia has. There are currently no cures for dementia but there are medications and other psychosocial interventions/ treatments available. These can improve symptoms in some people and optimise their functioning level, thus increasing their quality of life.

Common Types and Causes of Dementia There a hundred different forms of dementia, with the most common being Alzheimer’s disease, affecting 62% of sufferers. Vascular dementia or Multi infarct dementia is attributed to 17% Mixed Alzheimer’s disease and Vascular dementia account for 10% Lewy bodies dementia accounts for another 4% Fronto-temporal lobe dementia is responsible for another 2% and a remaining 2% for Parkinson’s disease The remaining 3% of cases are related to other causes which may be treatable. Taken from: ‘A comprehensive free Tutorial for Dementia Management in Primary care, a resource pack for GP’s and patients. Funded by the Department of Health’. (Alzheimer’s Society 2009)

Rarer, Less Treatable Conditions 1. Fronto- temporal lobe dementia 2. Learning disabilities and dementia 3. Creutzfeldt Jakob Disease Source: alzheimers. org. uk 4. AIDS related dementia Factsheets on these are available from: alzheimers. org. uk Other Conditions Of which are caused by physical & psychological pathology include: 1. Depression (severe forms can mimic symptoms of dementia) 2. Acute Confusional State /Delirium 3. Hypothyroidism 4. Vitamin B 12 deficiency 5. Tumor It is of paramount importance that any underlying physical or psychological causes are eliminated before someone is investigated for suspected dementia.

Alzheimer’s Disease For purpose of achieving the learning outcomes in this module we will be concentrating on the three most common conditions. In addition to these we will also explore ‘depression’ which can be mistaken by non-specialists as a dementia and Acute Confusional States as the latter two conditions may be responsive to appropriate interventions. Alzheimer’s Disease Although the features of Alzheimer’s disease are not dissimilar to other conditions, it is not an umbrella term for dementia as each condition has distinct differences in their clinical and behavioural presentations. No case of Alzheimer’s is the same as people react in different ways.

Vascular / Multi Infarct Dementia Vascular dementia has a less predictable decline than Alzheimer’s disease. The condition refers to a syndrome caused by different mechanisms all resulting in vascular lesions in the brain. Early detection and accurate diagnosis is of paramount importance as this type of dementia is partially preventable. There can be relative stability if vascular disease is minimised, but if left untreated there will be further deterioration in the condition after subsequent vascular accidents. There a number of potentially modifiable risk factors that appear to have an influence on the disease including common cardio-vascular risk factors i. e. smoking, high cholestrol, alcohol abuse, hypertension and obesity. Initial symptoms are often physical in presentation, such as weakness in limbs, slurred speech and dizziness with accompanying short term memory impairment. If a person continues to have minor strokes or ischemic attacks and they remain undetected, there will be an exacerbation of early symptoms and less treatable physical and psychological presentations.

Dementia with Lewy Bodies is caused by abnormal protein deposits which disrupt the brain’s normal functioning. These proteins are also found in the brain stem of people with Parkinson’s disease hence they deplete the neurotransmitter dopamine, which causes parkinsonian symptoms such as shuffling gait, stooped posture, rigidity, rest tremor, slowness and balance problems which regularly lead to numerous falls. These deposits also lead to disruption of perception and frequently cause recurrent complex visual hallucinations, fluctuating variations in attention and alertness. Prominent memory impairment may not be evident in the early stages. Other common Alzheimer’s pathology may become apparent as the condition progresses. As with all other types of dementia, each person’s experience is different with varying levels of pathology.

Acute Confusional states (Delirium) Onset is often rapid over the preceding 24 -48 hours. Occurrence is due to underlying physical pathology. There a number of potential causes, some of the most common being: The following mnemonic ‘DELIRIUM’, taken from the Merck manual of geriatrics, is a useful way of checking possible causes of delirium. Drug use, especially when the drug is first introduced or the dosage is adjusted. It is therefore of paramount importance that medication is reviewed at frequent intervals. Electrolyte and physiologic abnormalities e. g. , hyponatremia and hypoxemia Lack of Drugs commonly referred to as withdrawal. Infection, especially urinary tract or respiratory infections. Reduced sensory input e. g. , blindness, deafness, darkness or a change in surroundings. Intracranial problems e. g. , stroke, bleeding, meningitis, postictal state. Urinary retention and faecal impaction Myocardial problems e. g. , myocardial infarction, arrhythmia and heart failure. The person is often confused and disorientated in time and place and depending on severity, there may even be clouding of consciousness. They may become restless and agitated, with these behaviours possibly being exacerbated by hallucinatory experiences. This is where a person may see, feel, hear or taste things which others around them do not. The condition is usually transient once the person receives appropriate treatment for the underlying pathology. REMEMBER, delirium can occur in people with dementia so it is extremely important that the individual’s on going physical health and well being is continually monitored.

Depression in its severe form in older people can often be mistaken for dementia by non specialists as the person exhibits symptoms consistent with dementia, but the cause is pre existing psychological illness rather than a degenerative one. It is often of short and abrupt onset where dementia is insidious and cognitively debilitating in nature. As with clinical depression the causes may be re-active and often linked to some form of psychosocial stress or Endogenous pathology, where there is no identifiable external factor. Endogenous manifestations include persecutory delusions, where people may present suspicion, often claiming that others are trying to harm them. They also have negative, false fixed ideas of low self worth and poor health. Sometimes they experience nihilistic delusions where the person believes they are no longer their self or parts of their bodies are missing i. e. “I am dead”, “I have no bowels”. The prominent cognitive symptom of depressive dementia is loss of short term memory accompanied by reduced alertness and impaired concentration. It is important to note that people with this condition have an awareness of cognitive impairment (Cummings and Benson 1992) on careful testing memory and language functioning are intact: Psychomotor retardation is also evident. This means the person may be slow in their movements and speech is often slow and monotonous. Sometimes there is evidence of emotional blunting or agitation and anxiety. Once detected, this condition will respond favourably to antidepressant therapy and other psychotherapeutic interventions. It is therefore significantly important that a comprehensive psychological & cognitive assessment is completed before a diagnosis of dementia is explored.

Common Features

Common Features The diagrams illustrates some of the common features of these experiences. Remember, dementia is an umbrella term for a collection of clinical presentations which will vary according to the stage and nature of the condition

Impaired Cognitive Functioning This is the umbrella term for the disturbance or decline in all our intellectual processes. It involves all aspects of thinking, reasoning and remembering things. This will ultimately have a profound impact on a person’s judgement and severely affect all aspects of a person’s ability to engage in everyday life. Anecdotal examples of each of these experiences will follow. Memory Problems Memory problems are commonly seen as a key symptom of dementia. Initially it is characterised by fluctuating short term memory (recent events). The person may forget appointments or significant dates but during this period they will usually remember past events related to their childhood or adult years (long term memory). Problems with new learning and impaired working memory are evident i. e. the person may not be able to repeat something you have just told them (new learning), or they might appear to forget how to put their coat on for example (working memory). As the condition progresses, their long term memory invariably becomes disrupted. “Last time I saw my sister was 2 years ago, granted she did seem a bit more forgetful but we all become forgetful as we get older don’t we? When I arrived at the care home today she did not even recognise me and kept on saying her husband was coming home for tea. . . but he died in the Second World War. It’s so sad I wish l didn’t live on the other side of the world”.

Disorientation to time, place and person During the early stages of dementia, a person may regularly forget recent events, names and places but will often respond to prompting or reality orientation. However, as the condition progresses they may have little or no recollection of self or others. This can be extremely distressing for both the person with the condition and their loved ones. “The neighbours have brought mum home several times this week. She has been found walking up and down the street claiming she cannot find her house. I am really worried as a local taxi driver brought her home in the early hours of the morning. He told me she could not recall any of her personal details” Inability to carry out daily activities As poor concentration and distraction becomes evident people start to neglect their personal hygiene and dressing. They start to find it increasingly difficult to cater for their everyday needs. At its worse it may be necessary to activate 24 hour care due to the risk of self neglect. “Dad was found by a local shopkeeper wandering aimlessly up the high street. He was only wearing his shirt and underpants and he looked so dishevelled, as he hadn’t even washed or shaved. When I visited today his cupboards were bare and he was eating his meals on wheels lunch with his hands. He seems to have forgotten how to use a knife and fork. ”

Problems with Speech and understanding People often forget common words used in everyday language. A person may start to find it difficult to identify everyday objects and experience problems in communicating the right terms or using the correct language. “Initially dad would forget what certain things were called; instead of asking for a cup he would say something like can I have one of those things I drink tea out of? Now I get really frustrated as he cannot identify many everyday objects. The other day I asked him to put his watch on and he came back with a glove in his hand…. he couldn’t remember what I had asked him to do”. Difficulty in completing familiar tasks Tasks or activities which were automatically completed become impossible. “My sister used to forget sequential activities such as making a cup of tea but with some gentle encouragement she would be able to complete the task. Everything is so muddled now. Yesterday, I found her putting her washing in the fridge and she got very agitated angry when I told her what she was doing. She continued to insist her washing machine had broken down and told me to get the hell out of there”

Misplacing things Initially people will misplace and forget where they have left certain personal belongings but they will eventually come across them. However, as the condition progresses they may become suspicious and start accusing others of stealing things from them. This can be extremely distressing for both the person with dementia and their carers or loved ones. “My brother’s neighbour called me in a distressed state last night. Apparently he was shouting and cursing at her claiming she had stolen his wallet…. they have been neighbours for fifty years, he even called the police!” Decline in personal ability to cater for themselves As the condition reaches its latter stages, the person with dementia will become increasingly dependent on others to meet their daily needs. At the most advanced stage mobility becomes hindered and loss of bladder and bowel control is a common experience. “Last year dad managed to make himself a meal and drinks with visual written prompts around the house, but he became so forgetful he just wasn’t looking after himself. He ended up dehydrated and was showing signs of malnutrition; he stopped going shopping and was in such a muddle. His personal hygiene became poor and he has been dressing in clothes inappropriate to prevailing weather conditions. We are now looking in to residential and care facilities because he is at such a risk of accidental harm and self neglect. ”

Hallucinations These are experiences which affect one or more of our five senses. People may hear (auditory), see (visual), smell (olfactory) taste (gustatory) or feel (tactile) something in the absence of any external stimuli. “I asked to see my mother’s Community Mental Health Nurse today as I am extremely worried. Mum seems to be picking at the air and dusting herself down, she keeps saying insects are crawling all over her and its really upsetting for us. ” Delusions are false beliefs which are fixed and resistant to reason or argument, and not in keeping with the person’s cultural or religious background (Lyttle 1986). Often the delusions are accompanied by hallucinations. In the following case it would be an olfactory hallucination causing persecutory delusions. “My grandfather believes his neighbours are running gas through his air vents and he thinks they are trying to kill him. I try to reassure him this isn’t the case but he becomes very angry and accuses me of being in on it. ”

Confusion A person with dementia’s attention and behaviour appears to become detached from people and events occurring around them. Concentration and judgement becomes impaired. Initially carers say their loved ones seem to engage in a series of purposeless activities. “I went to see Dad on the ward today and he appears increasingly confused, he did not even recognise me. He kept wandering around picking up things along the way. When I arrived today he was carrying someone else’s shoes, a box of tissues and a tablecloth. He became so angry when the staff attempted to take them from him. ” Personality and Mood Alteration Certain existing personality traits may become magnified or the person may behave in a way that is increasingly out of character. This is a very troublesome experience for both the sufferer and their loved ones. This can put immense strain on relationships and the concerns expressed by others may exacerbate hostile reactions. “At the beginning we noticed mum was becoming short tempered but that was born out of pure frustration. Now she uses obscenities and physical aggression for no apparent reason. Her mood can change in an instant she can be shouting and cursing one minute then switch back to her true soft and gentle self. ”

Impaired Judgement As the condition progresses, people with dementia may lack insight into potential risks to health and safety. A person may unintentionally leave gases on or hot pans unattended. “Last week a neighbour found dad’s door wide open during the early hours of the morning. This week he left the gas on which caught light to his coat which he placed on the counter next to the cooker. Thank god the home help had just arrived. ” Behavioural changes can appear out of character or existing behavioural traits may become exaggerated. Changes may be subtle at first but gradually increase as the condition progresses. “I feel mortified when my father keeps undressing himself. He appears oblivious to the staff and other residents and when anyone attempts to intervene he becomes really angry. . . he never used to swear. ”

Loss of interest and initiative People often lose interest and volition in previous activities or hobbies they used to gain pleasure from. “The lady next door was always in the garden pottering about, she would spend hours on it and it used to look so beautiful. Now she just wanders out and stares at it, her expression is so blank and she seems to have lost all interest in it. ” Disturbed Sleep Disorientation and confusion often leads to reversed or disrupted sleep patterns. “I am so tired as my husband is sleeping periodically through the day, but during the night he just wanders around the house saying ‘Where am I’ or ‘Where is everybody? ’

Agitation and Restlessness These symptoms are usually caused by one or many of the complex experiences already explored in this section. However, it is important that other potential underlying physical factors such as pain or infection, for example, are eliminated. Consideration should also be made to the person’s underlying emotional and psychological well being. “Dad is much more relaxed since he started to take the antibiotics. He still has his moments but he is much more responsive to prompting and reassurance. He is back to enjoying our afternoon walks now. ”

Conclusion We noted at the beginning of this module that each person’s experience of dementia is different, but always has direct consequences for their physical, social and mental health. The severity is dependant upon the nature and pace of the illness. Although dementia is a terminal condition, people can live up to 10 years after diagnosis. People with dementia survive an average of four and a half years following their diagnosis. However, age, sex and any existing disability can alter life expectancy, according to the report in the Jan. 11 online issue of the British Medical Journal. The study found a nearly seven-year difference in survival between the youngest and oldest dementia patients - 10. 7 years for those aged 65 to 69 and 3. 8 years for those aged 90 and older. The average survival time after dementia diagnosis was 4. 6 years for women and 4. 1 years for men. Finally, dementia must not be viewed as a “living death” as Woods (1989) quite crudely describes the experience of Alzheimer’s disease. Dementia care is about building upon each individual’s strengths to maximise independence and continually work towards maintaining a person’s quality of life. .

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