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- Mental Health
- Dementia Frequently Asked Questions Continued
My mother/father has dementia… Will I get it?
Should I take vitamin B supplements?
Should I tell people about my diagnosis of dementia?
What are advanced decisions and living wills?
What are anti-Alzheimer’s drugs?
What are some of the early signs of dementia?
What are the different types of dementia that people get?
What benefits are available for people with dementia and their carers?
What is a Lasting Power Of Attorney (LPA)?
What is continuing Health Care (CHC)?
What is the difference between Alzheimer’s disease and dementia?
What is the memory test I have been asked?
What should I do if I suspect I have dementia?
Will I have to go into a care home now that I have been diagnosed with dementia?
My mother/father has dementia… Will I get it?
Should I take vitamin B supplements?
Should I tell people about my diagnosis of dementia?
What are advanced decisions and living wills?
People often have strong views about this, so it is important to write these views down and discuss your wishes with your friends, family and your GP.
The government produces guidance on living wills detailed below:
You can use an advance decision (also called advance directive) to indicate your wish to refuse all or some forms of medical treatment if you lose mental capacity in the future. You can't use it to request treatment.
A valid advance decision has the same effect as a refusal of treatment by a person with capacity: the treatment cannot lawfully be given - if it were the doctor might face civil liability or criminal prosecution.
Limitations on advanced decisions
You can't use an advance decision to:
- ask for your life to be ended
- force doctors to act against their professional judgment
- nominate someone else to decide about treatment on your behalf
As with advance statements, bear in mind that new drugs or treatments may be introduced in the future so you may wish to allow for new treatments even if refusing a current one.
Does an advance decision have to be in writing?
An advance decision doesn't all have to be in writing. However, although witnessed verbal instructions may be respected, it's best to make them known to a senior member of a medical team. A written decision helps to avoid any doubt about what you wish to refuse. In any case, since April 2007 some aspects of advance decisions have to be in writing.
You should sign, date and have witnessed a written advance decision in the same way as for an advance statement. A written advance decision could form part of a general advance statement, but it is clearest if it sits under a distinct heading, ideally 'Advance decision' or 'Advance directive, refusing treatment'.
Regulations of advanced decisions from April 2007
The Mental Capacity Act 2005 came into force in April 2007 and forms the legal basis for advance decisions.
Valid advance decisions
To be valid an advance decision needs to:
- be made by a person who is 18 or over and has the capacity to make it
- specify the treatment to be refused (it can do this in lay terms)
- specify the circumstances in which this refusal would apply
- not have been made under the influence or harassment of anyone else
- not have been modified verbally or in writing since it was made
Refusal of life-sustaining treatment
Advance decisions refusing life-sustaining treatment must:
- be in writing (it can be written by a family member, recorded in medical notes by a doctor or on an electronic record)
- be signed and witnessed (it can be signed by someone else at the persons direction - the witness is to confirm the signature not the content of the advance directive)
- include an express statement that the decision stands 'even if life is at risk'
When might an advance decision not be followed?
A doctor might not act on an advance decision if:
- the person has done anything clearly inconsistent with the advance decision which affects its validity (for example, a change in religious faith)
- the current circumstances would not have been anticipated by the person and would have affected their decision (for example, a recent development in treatment that radically changes the outlook for their particular condition) it is not clear about what should happen
- the person has been treated under the Mental Health Act
A doctor can also treat if there is doubt or a dispute about the validity of an advance decision and the case has been referred to the court.
Age Concern (Age UK) has produced a leaflet giving further guidance on living wills and advanced directives which can be downloaded here: http://www.ageconcern.org.uk/AgeConcern/fs72-advance-decisions-wills.asp
What are anti-Alzheimer’s drugs?
Donepezil (Aricept),
Rivastigmine (Exelon),
Galantamine (Reminyl),
Memantine (Ebixa) – not generally prescribed yet in the NHS but may be soon).
Other medications for symptom control could include: antipsychotics, antidepressants, anxiolytics and hypnotics.
What are some of the early signs of dementia?
• Disorientation in time and place
• Language difficulties (repeating sentences, problems naming objects, losing track of conversation)
• Problems performing familiar tasks
• Decreased or poor judgement
• Mood changes
• Loss of initiative
• Misplacing things around the home
• Personality changes
See the, “Are you worried about your memory?” booklet:
http://www.walsall.nhs.uk/Services/Dementia.asp
What are the different types of dementia that people get?
· Alzheimer’s disease;
A German neurologist called Alois Alzheimer discovered ‘plaques’ and ‘tangles’ which had developed in the structure of the brain and resulted in brain cell death. When this happens, atrophy or shrinkage can usually be seen on brain scans. People with Alzheimer’s disease are also believed to have a shortage of some brain chemicals, which are responsible for the transmission of messages around the brain.
· Vascular dementia;
Brains cells need a good supply of blood to remain healthy. The blood supply is called the vascular system. In vascular dementia, this supply can be cut off and lead to the death of brain cells. There are two main types of vascular dementia; one caused by stroke and the other by small vessel disease.
Strokes are interruptions to the blood supply of the brain causing permanent damage. The part of the brain the stroke is in makes a difference to the symptoms people have. A single stroke is known as single infarct dementia and several strokes are known as multi-infarct dementia. Multi-infarcts can be very small and barely noticeable to people.
The second type is small vessel disease which is caused by damage to tiny blood vessels deep in the brain. These symptoms tend to occur more gradually.
The vascular system can be damaged or made worse by high blood pressure, high cholesterol, diabetes and heart disease so it is important to identify and treat these conditions as early as possible.
· Mixed dementias;
Mixed dementia means having both Alzheimer’s disease and a vascular dementia.
· Lewy Body dementia;
Fredrick Lewy identified abnormal, tiny, spherical protein deposits in brain cells. These are known as Lewy bodies. They are believed to interrupt important chemical messengers in the brain. People with Alzheimer’s disease and Parkinson’s disease can also have these Lewy bodies present and therefore can share similar symptoms. This can make a diagnosis of Lewy body dementia more difficult. It is not known exactly why Lewy bodies occur.
· Dementia in Parkinson’s disease;
The causes of dementia in Parkinson’s disease are not yet fully understood. People who have dementia in Parkinson’s disease have been found to have Lewy bodies in their brain and there are similarities with Lewy body dementia. This affects about 15-30% of people diagnosed with Parkinson’s disease.
· Fronto-temporal dementia.
People diagnosed with Fronto-temporal dementia were originally said to have Pick’s disease. Pick’s disease was identified by Alois Alzheimer and named after his colleague and friend Arnold Pick, who had studied people with this disease.
Fronto-temporal dementia actually covers several conditions: Picks disease, frontal lobe degeneration and dementia associated with Motor neurone disease. All of these conditions cause damage to the frontal and temporal lobes of the brain. It is a less common form of dementia and often seen in younger people (under 65). Fronto-temporal dementia affects language skills, emotional responses and behaviour.
Whilst these types of dementia have slightly different presentations and can affect people in different ways, there are similar difficulties that people with dementia experience.
What benefits are available for people with dementia and their carers?
Carer's Allowance:
Carer's allowance: £53.90
Earnings threshold (after deduction of expenses): £95.00
Attendance Allowance (AA) for people over 65 years of age:
Higher rate: £71.40
Lower rate: £47.80
Disability Living Allowance (DLA) for people under 65 years or over 65 and already claiming this benefit:
Care component:
Higher rate: £71.40
Middle rate: £47.80
Lower rate: £18.95
Mobility component:
Higher rate: £49.10
Lower rate: £18.65
Council Tax:
People considered by their doctors as having severe mental impairment because of the dementia can ask for a medical certificate to be completed. This should be sent to the council tax office. This would allow for the person with dementia to become ‘invisible’ and not liable for council tax. If the person lives alone they would no longer pay council tax and if they lived with a partner the partner would get the 25% discount which single people can apply for.
What is a Lasting Power Of Attorney (LPA)?
An LPA is a legal document that you (the Donor) make using a special form. It allows you to choose someone now (the Attorney) that you trust to make decisions on your behalf about things such as your property and financial affairs or health welfare at a time in the future when you no longer wish to make those decisions or you may lack the mental capacity to make those decisions yourself.
An LPA can only be used after it is registered with the OPG.
There are two different types of LPA:
These health and welfare decisions can only be taken by somebody else when you lack the capacity to make them for yourself; for example if you are unconscious or because of the onset of a condition such as dementia.
The Attorney(s) you appoint to make personal welfare decisions will only be able to use this power once the LPA has been registered and provided that you cannot make the required decision for yourself.
You can decide to give your Attorney the power to make decisions about any or all of your health and welfare matters. This could involve some significant decisions, such as:
· giving or refusing consent to particular types of health care, including medical treatment decisions; or
· whether you continue to live in your own home, perhaps with help and support from social services, or whether residential care would be more appropriate for you.
If you want your Attorney(s) to have the power to make decisions about ‘life-sustaining treatment’, you have to expressly give your chosen Attorney(s) the power to make such decisions by choosing either option A or Option B in section 5 of the health and welfare LPA form.
You can also give your Attorney(s) the power to make decisions about day-to-day aspects of your personal welfare, such as your diet, your dress, or your daily routine. It is up to you which of these decisions you want to allow your Attorney to make.
A property and financial affairs Lasting Power of Attorney (LPA) allows you to plan ahead by choosing one or more people to make decisions on your behalf regarding your property and financial affairs. You can appoint a property and financial affairs Attorney to manage your finances and property whilst you still have capacity as well as when you lack capacity. For example, it may be easier for you to give someone the power to carry out tasks such as paying your bills or collecting your benefits or other income. This might be easier for lots of reasons: you might find it difficult to get about or to talk on the telephone, or you might be out of the country for long periods of time. You can decide to give your Attorney(s) the power to make decisions about any or all of your property and financial affairs matters. This could include paying your bills, collecting your benefits or selling your house.
Who can make an LPA?
Anyone aged 18 or over, with the capacity to do so, can make an LPA appointing one or more Attorneys to make decisions on their behalf. You cannot make an LPA jointly with another person; each person must make his or her own LPA.
People involved in making an LPA
The following are the different people involved in making an LPA:
· The Attorney(s)
An Attorney is the person(s) you choose and appoint, using an LPA form, to make decisions on your behalf about either your health and welfare or property and financial affairs or both. It is an important role and one that the person chosen has to agree to take on.
· Donor
A Donor is someone who makes an LPA appointing an Attorney(s) to make decisions about his/her health and welfare, property and financial affairs or both.
· Named person(s)
A named person is someone chosen by the Donor to be notified when an application is made to register their LPA. They have the right to object to the registration of the LPA if they have concerns about the registration. The named person(s) are specified in the LPA form. Selecting people to notify of an application to register is one of the key safeguards to protect you if you make an LPA.
· Certificate provider
A certificate provider is a person the Donor must select to complete a Part B Certificate in the LPA form. The certificate provide must confirm that the Donor understands the LPA and that the Donor is not under any pressure to make it. The certificate provider is another important safeguard.
· Witness
A witness is someone who signs the LPA form to confirm that they witnessed:
o the Donor (the person making the LPA) signing and dating the LPA form; or
o the Attorney(s) (the person appointed by the Donor) signing and dating the LPA form.
It is an important role and acts as a further safeguard.
More information can be obtained from their website including application packs: http://www.publicguardian.gov.uk/index.htm
What is continuing Health Care (CHC)?
NHS continuing healthcare means a package of care that is arranged and funded by the NHS and is free of charge to the person receiving the care. This is sometimes called fully funded NHS care.
Primary care trusts (who manage local health services) are required to carry out an assessment for NHS continuing healthcare where health services might be needed. A checklist is commonly used to decide whether someone needs a full assessment. Some people who need an urgent decision, such as those who are terminally ill, should be fast-tracked to receive NHS continuing healthcare immediately.
Where is NHS continuing healthcare offered?
NHS continuing healthcare can be provided by the NHS in any setting, including a care home, hospice, hospital or the home of the person you look after. If NHS continuing healthcare is provided in a care home, it will cover the care home fees, including the cost of accommodation, personal care and healthcare costs. If NHS continuing care is provided in the home of the person you look after, it will cover personal care and healthcare costs.
Responsibilities of social services
If NHS continuing healthcare is provided at the home of the person you look after, local social services may still have responsibilities to provide some services for you and the person you're looking after. It is possible to receive 'mixed' packages of care, where some services come from the NHS and some from social services.
Where local social services provide the care services, it will usually do a financial assessment to decide whether the person you look after must make any financial contribution.
Who qualifies?
The person being assessed should have a comprehensive assessment by any of a range of the healthcare professionals involved in their care. There should be clearly identified professionals who will co-ordinate the process.
The team will consider each of the healthcare needs of the person you're looking after. These are:
· behaviour,
· cognition (understanding),
· communication,
· psychological/emotional needs,
· mobility,
· nutrition (food and drink),
· continence,
· skin (including wounds and ulcers),
· breathing
symptom control through drug therapies and medication, and altered states of consciousness.
Those carrying out the assessment should look at what help is needed, how complex these needs are, how intense and unpredictable these needs can be, as well as any risks that would exist if adequate care was not provided. For each of these issues a decision is then made about the level of need. The levels are 'priority', 'severe', 'high', 'moderate' or 'low'.
Your own views and those of the person you're looking after should also be taken into account when the assessment is carried out.
If the person you're looking after has priority needs in particular areas or severe needs in at least two, then NHS continuing healthcare should be provided. Someone can also qualify for NHS continuing care if they have a severe need in one area plus a number of other needs, or a number of high or moderate needs. In these cases the overall need, and interactions between needs, will be taken into account, together with evidence from risk assessments, in deciding whether NHS continuing healthcare should be provided.
A case review should be carried out three months after the original decision, even if the person you're looking after did not receive a full assessment. Following that first review, further reviews should be carried out at least every year.
Age UK publish guidance on care homes and the costs involved, which can be downloaded here: http://www.ageuk.org.uk/health-wellbeing/doctors-hospitals/nhs-continuing-healthcare-and-nhs-funded-nursing-care/
What is dementia?
What is the difference between Alzheimer’s disease and dementia?
What is the memory test I have been asked?
What should I do if I suspect I have dementia?
Where can I find more help?
http://www.walsall.nhs.uk/Services/Dementia.asp
Will I die from dementia?
Will I have to go into a care home now that I have been diagnosed with dementia?
