Dementia / Alzheimers

 

Dementia and Alzheimer’s

On this page you can find information and frequently asked questions about dementia and Alzheimer’s disease. Click on a question below to immediately jump to it. Below each question you can find links to jump to the top of this page.

Dementia – General Information

What is Dementia?
Is Dementia the same as aging?
What is the difference between Alzheimer’s Disease and Dementia?
What are the causes of Dementia?
How common is Dementia?

Symptoms

What are the symptoms of Dementia?
Does everyone with Dementia or Alzheimer’s become aggressive?

Caring for Someone with Dementia

I’m worried about my memory / my relative’s memory. What should I do?
A friend of mine is now suffering obvious changes, such as not knowing the way to go, not remembering important things he agreed on a few days previous. How does his wife handle the situation in as much as he doesn’t think there is anything wrong?
My mother has been diagnosed with early dementia. How can we help her to plan for the future?

Support for Carers

What help is available to family carers in Norfolk when the person they are caring for is wandering and confused?
I would be interested to hear what is being in done in Norfolk with the recent highlighted problem concerning “over medication” or the “chemical cosh”? What resources are there for Norfolk carers to check their Carers medication and what processes and checks are available to them if they think their medication is wrong?

Driving Issues

Can someone who has Dementia drive a car?
I was wondering if it could be asked what the situation is with someone who is showing signs of dementia or Alzheimer’s Disease when it comes to the ability to be safe to drive? Is there a process that has to be gone through if you think they are unsafe, and if so, what is it?

Treatment

When will there be a cure for dementia?
How can we get involved with research?
What kinds of treatments are available for someone with Dementia?
Would a high level of Vitamin B in her diet help my wife with her Alzheimer’s Disease?

Risk of Developing Dementia

One of my parents had Dementia. Does this mean that I am at increased risk of getting it myself?
What can I do to reduce my risk of developing dementia?

Dementia – General Information

What is dementia?

• Dementia is a disorder of the brain.
• It is usually chronic & progressive.
• The condition causes disturbance of brain function (memory, orientation, judgement, language, thinking, understanding…) and associated changes in self-care abilities, social skills, ability to work / manage everyday activities & household tasks.
• Dementia is an “umbrella term” for a group of conditions with different underlying causes and pathological changes in the brain.
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Is dementia the same as aging?

• No.
• There are some mild / subtle changes seen in normal aging (slight slowing in speed and efficiency of memory), but these are mild & don’t cause problems with everyday living.
• Major cognitive changes which significantly interfere with everyday living are not a normal part of aging.
• However, many of the conditions that give rise to dementia (e.g. Alzheimer’s Disease, multiple small strokes) become increasingly common with age. Also, other medical conditions that can lead to, say, strokes (e.g. diabetes, high blood pressure) are more common as we get older. Hence, as people get older and older, the risk of developing dementia does increase.
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What is the difference between Alzheimer’s disease and dementia?

• “Dementia” is a term that covers all of the different conditions which cause cognitive deterioration.
• “Alzheimer’s Disease” is the commonest cause of dementia (responsible for about two thirds of dementia).
• Alzheimer’s is a neurodegenerative disease. Various abnormal proteins are deposited in the brain. Nerve cells (neurons) degenerate and die. As the condition progresses there is an increasing loss of brain cells and a breakdown of the connections between them.
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What are the causes of dementia?

• There are lots of underlying causes. Some are common, some are very rare.
• Alzheimer’s Disease is the most common, followed by:
o Multiple small strokes (vascular dementia)
o Mixed dementia (Alzheimer’s + vascular)
• Other neurodegenerative diseases sometimes cause dementia (e.g. Parkinson’s Disease / Dementia with Lewy Bodies).
• Rarer causes include fronto-temporal dementia, vitamin B12 deficiency, severely under active & untreated thyroid function and Huntington’s Disease.
• Some other mental health problems can sometimes look a bit like dementia (e.g. severe depression) but the memory / cognitive changes improve with treatment.
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How common is dementia?

• Dementia is common.
• Approximately 800,000 people in the UK have some form of dementia.
• Dementia is becoming increasingly common as people are now living to greater & greater ages.
• Increasingly common in older age groups:

Age 60 and below 0.1% 1 in 1000
Age 61 – 70 1.5% 3 in 200
Age 71 – 80 5% 1 in 20
Age 81 – 90 25% 1 in 4
Age 90+ 35% 7 in 20

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Symptoms

What are the symptoms of dementia?

• The symptoms can broadly be divided into “cognitive” and “non-cognitive”.
• “Cognitive” symptoms include changes in:
o Attention & concentration
o Orientation (time: day, date, time of day and place: where am I?)
o Memory (increasing forgetfulness for recent events, repetitiveness, forgetting appointments etc)
o Language (word finding problems, difficulty in understanding)
o Visual abilities (recognising what objects are, recognising people)
o “Frontal-executive” skills (judgement, sequencing, planning etc)
o All of the above contribute to the person with dementia having increasing difficulty in managing to cope with everyday life & activities and being able to care for themselves as the illness progresses
• “Non-cognitive” symptoms (sometimes called “behavioural & psychological Symptoms” – BPSD) can include:
o Changes in mood / depression
o Loss of motivation & apathy
o Changes in sleep patterns
o Irritability or aggression
o Wandering
o Incontinence
o Seeing things (hallucinations) or odd / abnormal ideas & beliefs (delusions)
o Not everyone with dementia will get all (or indeed any) of these
o However, these are the symptoms that cause most trouble & distress to both people with dementia & their carers.
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Does everyone with dementia or Alzheimer’s become aggressive?

• No. This is not inevitable.
• If it does occur, it may be a phase of the illness that the person passes through.
• Sometimes aggression represents an exaggeration of pre-existing personality traits – but often it is completely out of character.
• Aggression can sometimes be reduced by:
o Avoiding contradicting / arguing with the person with dementia
o Distracting them onto another topic
o Walking away for a few minutes
o Trying to understand what has provoked it may be helpful for the carer to avoid similar situations in the future
o If frequent or severe, medication can sometimes help
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Caring for Someone With Dementia

I’m worried about my memory / my relative’s memory. What should I do?

• Don’t ignore it – speak with your GP.
• It may very well not be dementia & he / she may be able to reassure you, or it could be due to an underlying problem that can be treated (e.g. an under active thyroid gland, depression or certain kinds of sleep problems).
• Your GP may well want to look for other health problems that can be linked with memory problems or those that increase the risk of developing dementia (e.g. diabetes, high blood pressure).
• The GP will want to talk with you (and possibly also with a relative or someone who has known you well for a while to see if they have noticed any change in your memory etc).
• The GP may do some brief tests of memory & other cognitive functions.
• The GP may do some blood tests
• Depending on the nature of the problem & its severity, the GP may refer you on to a memory clinic / memory assessment service / old age psychiatry service / neurologist for a more detailed assessment (likely to include more cognitive testing & possibly a CT scan).
• If the problem is dementia, then it is best to pick it up early because treatments may be more effective in the earlier stages.
• Early diagnosis also allows the person developing dementia to be involved in making decisions about their future (where they would like to live, who they want to manage their finances & other affairs etc – “Advance Care Planning”).
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A friend of mine is now suffering obvious changes, such as not knowing the way to go, not remembering important things he agreed on a few days previous. How does his wife handle the situation in as much as he doesn’t think there is anything wrong?

• There is no “right” or “wrong” way to do this, nor is there a “one size fits all” solution.
• Potential solutions will depend on things like: the personality of the person with dementia (and their carer), the stage / severity of their dementia and what the problems & difficulties are.
• Finding a solution that works is often a question of experiment / trial & error / lateral thinking. Techniques may need to change as the illness progresses (things that work in early dementia may not work in more advanced illness).
• Possible techniques may include:
o Adopting a fairly rigid routine for the week (people with dementia like routine and don’t cope well with changes)
o Making increased use of a diary / calendar / whiteboard
o An electronic clock calendar that provides information about the time (including whether it is morning or evening), day, date, month
o Making sure that the person with dementia has information on their person (say small laminated cards placed in their wallet, coat pocket etc) that say who they are, where they live, that they have memory problems and can become disorientated or muddled, and giving contact phone numbers for relatives & carers) so if they do wander or get lost they can be reunited quickly with their carers
o “Assistive technology” can sometimes be helpful (some is available via Social Services), for example: door alarms, pressure pad by the bed to automatically switch the light on and alert the carer if the person gets up at night, gas detectors, even GPS activated mobile phones that can be used to locate someone who has wandered off
o Direct confrontation / disagreeing / arguing with the person with dementia is usually unhelpful & can make things worse
o Gentle reminders can work (but may need to be repeated often)
o Patience, not showing you are irritated
o Using distraction if they are becoming agitated (“lets make a cup of tea”) can be very helpful
o Sometimes it is better to walk away for a few minutes rather than get into an argument
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My mother has been diagnosed with early dementia. How can we help her to plan for the future?

• An advantage of receiving an early diagnosis is that the person with dementia can be actively involved in making decisions about what they would like to happen in the future – Advance Care Planning.
• Lasting Power of Attorney (LPA) is a legal document which has to be made whilst the person with dementia has the mental capacity to make it.
o Allows one (or more) people whom the person trusts (often children) to be appointed as attorneys
o Two parts a) financial matters and b) health & welfare decisions; can do one or both parts
o If the person with dementia eventually loses the capacity to make their own decisions, then the attorneys step in and can make decisions on their behalf
o Making a LPA isn’t that cheap (solicitors fees + a registration fee). However, it can make things a lot easier & cheaper in the long run. For example, if the person owns a property and it needs to be sold – if there is no LPA then the Court of Protection have to be involved, this is complicated, time-consuming and expensive. It is particularly important to make an LPA for financial matters is someone owns their house or has significant savings
• Appointeeship – your mother can appoint someone else (usually a relative) to receive and administer their state pension & any benefits they receive.
• Advance statement – she can put in writing her wishes regarding what she would like to happen in the future. This isn’t legally binding, but can be very helpful for family, doctors, social workers etc in making plans and decisions later on if she loses capacity.
• Will – everyone should make a will. It allows you to decide exactly who is going to get what after you are gone. It is something that has to be done whilst you have the mental capacity to do so. If someone dies without leaving a will then it is much slower and more complicated for their family.
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Support for Carers

What help is available to family carers in Norfolk when the person they are caring for is wandering and confused?

(On a practical note what help is available to family carers in Norfolk when the person they are caring for is wandering and confused? This makes it a very tiring experience for the family carers many of whom are elderly themselves. Fewer people seem to qualify for continuing care yet the carers are unable to leave the person they care for in order to carry out simple everyday necessities such as taking a bath, shopping, carers attending medical appointments or the dentist or heaven forbid taking a break or carrying out a hobby. Many sufferers of dementia/Alzheimer’s are not amenable to attending day centres or even leaving the familiarity of their home so it feels like a prison to those caring. What relief help is actually available throughout Norfolk? Is this really being built-in to people’s personal budgets and are carers being consulted about respite breaks?)

• Two points for discussion; wandering and help for carers.
• Wandering – what is the person doing and why?
o Agitation / restlessness / “purposeless” wandering
o “Purposeful” wandering
o Understanding why the person is behaving as they are may give some clues to how to manage it
• Failing to recognise house as theirs & wanting to go “home” (i.e. “home” from childhood or many years ago)
• “Need to collect the children from school” etc Reality orientation may help (photos of grown up children, explaining the current situation etc)
Regular exercise (taking the person out for regular walks) Are they safe to go out by themselves? “Active risk-taking” (what level of risk is acceptable & how can the risks be reduced?)
o Appropriate medication can sometimes help reduce agitation / restlessness, but it generally won’t help with more “purposeful” wandering
o Environmental adaptations may be helpful
Deadlock on front door so person with dementia can’t get out without the carer being aware
• Assistive technology (door alarm, etc – covered in more detail here).
• Secure perimeter around the garden.
• What help is available to carers in Norfolk?
o Carers very important
o Approx. £6 billion / year care provided “free” by relatives & informal carers
o Caring is very hard work & stressful – rates of depression are high amongst carers of people with dementia
o Contact Norfolk County Council & ask for a Carers Assessment
• Don’t minimise the problems or underestimate the time & effort you are putting in.
• Think of the “bad days” as well as the “good days”.
o Broadly help can be divided into care outside the home and care within the person’s own home
o Care outside the home
• Day care.
• Respite breaks.
• Some voluntary organisations can organise holidays for carers with or without the person with dementia, however these are not suitable or acceptable to everyone and people will be financially assessed to see if they have to pay or make a contribution.
o Care within the person’s own home
• Relief care.
• Age UK can advise regarding private home care agencies which charge for their services.
• Crossroads offer a service for regular or occasional relief breaks (but waiting lists can be long).
• If the person with dementia has a personal budget then part of that can be used to fund relief care.
• Voluntary Norfolk can sometimes provide a volunteer sitter for short periods.
• In emergencies, Swifts and Night Owls may be able to help and Social Services can sometimes put in a night sitter on a short-term basis to cover a crisis.
o It has to be recognised that the above is less than perfect and services available are incomplete and, in the current financial situation, are being squeezed ever tighter.
o Who Cares for Carers booklet is very useful – available at www.norfolkcarers.org.uk and www.norfolk.gov.uk
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I would be interested to hear what is being in done in Norfolk with the recent highlighted problem concerning “over medication” or the “chemical cosh”? What resources are there for Norfolk carers to check their Carer’s medication and what processes and checks are available to them if they think their medication is wrong?

• Use of sedative medication in dementia is a very controversial area – given increasing prominence in recent years.
• However, medication does have it’s place in people with dementia when used appropriately.
• Medication is used for a variety of reasons in people with dementia – most of these cases aren’t controversial at all. For example:
o Medications used to treat co-existing physical health conditions (e.g. arthritis, heart problems)
o Medications used to treat the dementia itself or conditions giving rise to the dementia (e.g. cholinesterase inhibitors such as Aricept in Alzheimer’s Disease, aspirin to reduce the risk of having a stroke in people with vascular dementia)
o Medication used to treat some co-existing mental health problems in dementia (such as antidepressants for depression occurring in someone with dementia)
• The controversial area is the use of sedative or antipsychotic medication in people with dementia.
• There is evidence nationally of significant over-use.
• Often this is because the drug isn’t reviewed and withdrawn once it is no longer required.
• Over-use is associated with problems (including over-sedation, increased risk of falls, increased risk of stroke, may accelerate cognitive decline).
• Again, these drugs do have their place in managing problems such as:
o Distressing hallucinations & paranoid ideas
o Severe agitation & aggression
o Doses should be kept as low as possible, reviewed frequently & stopped as soon as possible
• Where should carers go if they have concerns regarding medication?
o Speak with the GP or Consultant responsible for providing the person’s medical care and prescribing the medication (or to the Community Mental Health Nurse if they have one)
o Discuss the matter with the local pharmacist
o In a residential home discuss your concerns with the staff / manager and ask that the GP reviews the situation
o Norfolk & Waveney Mental Healthcare NHS Foundation Trust have a very helpful Pharmacy with a helpline (01603 421212 M-F 09.00 – 16.30) and very good website (www.choiceandmedication.org.uk/norfolk-and-waveney) and can provide a lot of useful information regarding medication and side-effects
o Norfolk Medicines Support Service can often help if people have problems with managing their medication (forgetting to take it etc), for example by providing telephone prompts, medication in blister packs, automated medication carousel etc
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Driving Issues

Can someone who has Dementia drive a car?

• Sometimes, in the early stages, it is possible to continue to drive.
• Once diagnosed, the patient has a legal duty to notify DVLA (and their insurance company) of their diagnosis.
• DVLA will ask the GP / Specialist for a medical report.
• If this is favourable, DVLA will issue a licence for 1 year at a time and will need a further medical report before renewing the licence.
• If there are any doubts about the person’s safety to drive, relatives / carers should flag this up to the doctor (or DVLA).
• If in doubt – stop driving!
• Discontinuing driving can be a huge blow – however, consider how much it costs to run a car (buying it, servicing, tax & insurance, petrol, car parking etc). Taxis & public transport may be considerably cheaper!
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I was wondering if it could be asked what the situation is with someone who is showing signs of dementia or Alzheimer’s Disease when it comes to the ability to be safe to drive? Is there a process that has to be gone through if you think they are unsafe and if so what it is?

• Probably the first thing to do is to flag it up to the GP, so that the person can be seen and can be given a diagnosis.
• The doctor (GP or specialist such as an Old Age Psychiatrist), as well as making a diagnosis, can offer an opinion as to whether or not the person with dementia should continue to drive or not.
• Once somebody has been given a diagnosis of dementia, they have a legal duty to notify DVLA and their insurers of their condition.
• You can do this on form CG1, available on the Direct Gov. websitewww.direct.gov.uk/en/Motoring/DriverLicensing/MedicalRulesForDrivers/index.htm Alternatively, notify DVLA in writing and they will send you a copy of the form.
• DVLA will then contact the doctor and send them a questionnaire regarding the person and their fitness to drive. It asks questions such as “does the person have significantly impaired judgement?” or “Do they get lost or disorientated?” If the answer to some of these questions is “Yes”, then DVLA will revoke the person’s licence and they can no longer drive. However, in mild / early cases, the DVLA will allow driving to continue and will issue a licence for 1 year. At the end of that period, DVLA will need a further medical report before issuing a further licence.
• Sometimes people & families are unsure if they are really safe to drive. One option is to contact East Anglian Driveability (formerly the Kilverstone Mobility Assessment Centre –www.eastangliandriveability.co.uk/ Tel. 01842 753029) – they have a team of Occupational Therapists & specialist driving instructors who can undertake assessments of people’s physical and cognitive ability to drive. People can refer themselves, but it does cost about £90.
• If the person continues to drive after their licence is revoked either the family needs to get involved (e.g. remove the car keys, disable the car) or the police need to be involved.
• Discussing the costs involved in buying, insuring, servicing, insuring, putting petrol into a car etc can sometimes be helpful in persuading people to stop driving. A free bus pass and an occasional taxi may be considerably cheaper (although can be difficult for people with physical disabilities and people who live in rural areas).
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Treatment

When will there be a cure for dementia?

• We don’t know!
• Lots and lots of research is going on to develop better treatments.
• It takes a very long time (10 – 15 years) and millions of pounds to get a new drug from the laboratory bench through clinical trials and into general use.
• We do need the help of patients and their carers to get involved in dementia research so that better treatments for dementia can be developed.
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How can we get involved with research?

• In Norfolk we are trying hard to involve more people with dementia and their families in research studies.
• Norfolk & Waveney Mental Health Trust is working closely with the University of East Anglia to develop and run studies locally.
• DeNDRoN East Anglia (Dementias and Neurodegenerative Diseases Local Research Network) based at the Julian Hospital runs studies and clinical trials in Dementia (and also in Parkinson’s Disease, Huntington’s Disease and Motor Neuron Disease).
o There are a variety of studies (e.g. studies looking at the time spent by carers and the financial costs to them of looking after a family member with dementia; clinical trials of new drugs)
o Currently recruiting to a study called SHIELD (Support at Home – Interventions to Enhance Life in Dementia).
• Looking at the experience of caring for a family member who has dementia.
• Does putting new carers in touch with a more experienced carer improve confidence & help carer well-being?
• Some carers will be put in touch with carer-supporters for 10 months to see if this helps.
• People with dementia will also have the opportunity to participate in a reminiscence group (sharing memories & getting to know each other).
• We are looking for anyone aged over 18 who is supporting a relative with dementia and lives within about 15 miles of the City, particularly if they are new to the caring role.
• Also looking for experienced carers who would be willing to be trained to act as carer-supporters.
• Anyone potentially interested, please contact Juni West (DeNDRoN Research Nurse) on 01603 421850 or e-mail SHIELD@nwmhp.nhs.uk.
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What kinds of treatments are available for someone with Dementia?

• Taking a broad view, they can be divided into medical treatments (tablets), psychological treatments (talking treatments) and practical help.
• Medical treatments:
o Tablets specifically designed to treat some kinds of dementia (Alzheimer’s Disease & Dementia with Lewy Bodies)
• Cholinesterase inhibitors (Aricept or Donepezil etc)
• Memantine
o Medications to reduce the risk of stroke in people with vascular dementia
• Aspirin.
• Tablets to lower cholesterol and blood pressure.
o Medications used to reduce behavioural and psychological symptoms in dementia
• Antidepressants.
• Sedatives.
• Psychological / “talking” treatments.
o Cognitive stimulation therapy
o Reminiscence therapy
• Practical help.
o Home care
o Day care
o Meals on wheels
o Respite breaks
o Benefits
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Would a high level of Vitamin B in her diet help my wife with her Alzheimer’s Disease?

• Some research has shown that high levels of vitamin B resulted in less brain shrinkage over 1 year in brain scans of a group of people with mild cognitive impairment. However:
o This wasn’t a study of people with dementia or Alzheimer’s Disease
o They did brain scans, but didn’t do memory tests at the end of the study, so we don’t know if it had any effect on memory (as opposed to brain shrinkage)
o Be careful, because high doses of some vitamins (e.g. vitamin A) can actually be harmful
o Bottom line is that more research is needed to answer this question. Probably best to stick to a good, balanced diet!
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Risk of Developing Dementia

One of my parents had dementia. Does this mean that I am at increased risk of getting it myself?

• Not necessarily – that depends on a number of factors including the cause of the dementia & the age of onset.
• Generally vascular dementia isn’t inherited (although some risk factors for vascular disease, such as high blood pressure, high cholesterol and diabetes do run in families).
• There are some (rare) conditions such as Huntington’s Disease and early onset Alzheimer’s Disease (people who develop it at very young ages such as in their 40s) that have a clear genetic cause. Genetic tests and counselling is available.
• If a parent had late onset Alzheimer’s, then there is a slightly increased risk to their children (e.g. risk of someone developing Alzheimer’s disease in their 90s is roughly 1 in 3 (33%) if neither parent had it and roughly 1 in 2 (50%) if a parent had Alzheimer’s). The older your parent was when they developed Alzheimer’s, the lower the risk is that their children will develop it.
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What can I do to reduce my risk of developing dementia?

• “What’s good for your heart is good for your head”.
o Regular exercise
o Healthy diet
o Don’t smoke / stop smoking
o Not too much alcohol
o Get your blood pressure checked regularly & treated if necessary
o If you have diabetes, keep it well-controlled
o Keep socially and mentally active (get out & about, meet friends, do activities that you enjoy)
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Dr Andrew Tarbuck, Consultant in Old Age Psychiatry at the Julian Hospital, Bowthorpe Rd., Norwich.

Carers Corner on Future Radio – 29th September 2011

 Posted by at 6:49 pm