Your care plan
If you are diagnosed with dementia, your future health and social care needs will be assessed and a care plan will be drawn up. A care plan is a way of ensuring you receive the right treatment for your needs.
Examples of questions that could come up while drawing up your care plan are listed below.
- What support do you or your carer need for you to remain as independent as possible?
- Are there any changes that need to be made to your home to make it easier to live in?
- Do you want ot attend a memory group to help your memory?
- What information do you need about the illness and benefits?
- Is there any medicines that will help? If there are, you should be given information about them and asked if you need help in taking them. It will also be discuseed how the effects of the medicines will be monitored.
This is your care plan so ask as many questions as you want and make sure that your wishes are known.
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Patient consent, Power of Attorney and advanced directive
Patient consent means that you must give express permission before any medical treatment can be carried out on you. Consent is needed for all treatments, whether it's a simple blood test or an organ donation.
The only time when treatment can go ahead without your permission is if you cannot make a decision on your own and the doctors responsible for your care believe that treatment is in your best interests.
There may be a time in the future when your symptoms mean that you are no longer able to give consent. You may wish to give a relative you trust the power to make decisions about you if you cannot - this is called Lasting Power of Attorney.
You may also wish to draw up an advanced directive after first receiving a diagnosis of dementia. An advanced directive makes your treatment preferences known now, in case you are unable to do this later.
Subjects covered by an advanced directive can include:
- what treatment you would consider having and in what circumstances
- what types of treatment you would never wish to have, no matter what the circumstances
- what type of end-of-life care you would wish to have, e.g. whether you would want to be resuscitated by artificial means, such as having a breathing tube inserted into your neck if you have lung failure
- whether you would be willing to donate organs after your death
You cannot request anything illegal in your advanced directive, such as assisted suicide. Your care team can provide you with more information and advice about advanced directives.
You may wish to appoint a friend or family member to take care of your financial and legal affairs. This is known as granting power of attorney.
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A number of different psychological treatments can be used to help you cope with the symptoms of dementia and slow down the symptoms.
Cognitive stimulation and reality orientation therapy
Cognitive stimulation involves taking part in activities and exercises that are designed to improve your memory, problem-solving skills and language ability.
Reality orientation therapy is a type of therapy that reduces feelings of mental disorientation, memory loss and confusion, while improving feelings of self-esteem.
The therapy may involve group work in a classroom, in which a board prominently displays information such as:
- the current day and date
- the location of the classroom
- the names of the people in the group
The group members repeat a series of tasks designed to give mental stimulation. These tasks also reinforce information regarding the time, the place and the people involved in the group.You will be involved in discussions about a variety of topics, as well as taking part in word and memory games.
Behavioural therapy is used to help treat many of the behavioural problems that are associated with dementia, such as depression, aggression and delusional thinking.
Behavioural therapy is usually provided by a carer, who can be a trained friend, relative or an employed carer. It is supervised by a health professional.
Behavioural therapy uses a problem-solving approach where possible motivations and reasons for troublesome behaviour are identified. Different strategies are adopted to try to change that behaviour.
For example, a person with dementia may have a history of wandering out of their home or care centre because they feel restless. Therefore, a strategy that involves encouraging them to take part in regular physical exercise may lessen their restlessness.
Acetylcholinesterase inhibitors are widely used to treat Alzheimer's disease. They are not usually recommended for other forms of dementia because the evidence for their effectiveness is limited and, in some cases, they may make symptoms worse.
One exception is for people living with dementia with Lewy bodies who have behavioural problems, such as delusions or hallucinations that cause them significant distress or lead to challenging behaviour.
Acetylcholinesterase inhibitors work by preventing the breakdown of the neurotransmitter acetylcholine, as low levels of acetylcholine have been linked to behavioural problems.
Side effects include:
- muscle cramps
- loss of appetite
- aggressive behaviour
- dizziness and fainting
- urinary incontinence
Antipsychotics are medicines that can be used to treat challenging and disruptive behaviour in a person, such as aggression or agitation.
However, antipsychotics are not usually recommended for the treatment of dementia because:
- they can increase the risk of a person experiencing cardiovascular diseases, such as stroke and heart attack
- they can make the symptoms of dementia worse
Also, in people who have dementia with Lewy bodies, there is evidence that antipsychotics can cause a range of serious side effects, such as:
- being unable to perform tasks
- being unable to communicate and possibly
- sudden death
Antipsychotics are usually only used in cases where there are severe symptoms of challenging and disruptive behaviour that is judged to place you or others at risk of harm. They are only used if there is a full discussion between yourself or your carer and your care team about the benefits and risks of treatment.
Antipsychotics will be prescribed at the lowest dose possible and for as short a time as possible. Your health will also need to be carefully monitored if you are taking antipsychotics.
Side effects of antipsychotics can include:
- muscle twitches
- weight gain
- blurred vision
- lack of sex drive
- a dry mouth