Dementia

If you are diagnosed with dementia what happens next will depend on where you live, whether or not you are receiving any drug treatment, the severity of your symptoms, the type of dementia you have, whether or not you have a family member or other person to provide care and support.

If you receive drug treatment, it is likely to be monitored either by a hospital specialist or by your GP at 6 month intervals.

You should receive or be offered a review of your condition at least every 15 months whether or not you your are receiving drug treatment. That review will usually take place in your GP practice or health centre, should be face-to-face and include:

• an appropriate physical and mental health review 
• if applicable, a review of your carer's needs for information which takes into account the stage you are at in your illness and your carer’s and your own health and social care needs 
• if applicable, a review of the impact of caring on the care-giver 
• if applicable, a review of communication and co-ordination arrangements with secondary (ie hospital) care .

To begin with, people with a diagnosis of dementia may not need help with day-to-day activities, but this will vary from person to person and will depend on the stage of the illness and what support they already have at home. Sometimes, the GP or specialist will refer a person to the local social work department for a care assessment; in other cases it is up to the individual or his or her family to ask for help.

Planning for the future

Under the Adults with Incapacity (Scotland) Act 2000, doctors must take your past wishes into account when deciding what treatment to give you.

Powers of attorney are the best way for you to have maximum say in what happens if one day you can’t make decisions yourself. Until that time, you are in control.

You can grant a power of attorney only if you are capable of understanding what you are doing. This means if you have early dementia it is very important to consider giving someone power of attorney as soon as possible. No-one, not even your close relatives, can arrange a power of attorney for you, so it must be done while you are able to express your own wishes. Later on, it may be too late.

There are 2 types of power of attorney – a continuing power of attorney which covers financial and legal matters; and a welfare power of attorney which covers personal welfare.

You can combine both sets of powers in a single document or they can be separate. You can also appoint different people to take on the two different types of power of attorney. Both types have to be registered with the Office of the Public Guardian (OPG).

See the OPG website for more information. 

Medicines

Acetylcholinesterase inhibitors

The medicines developed to treat the symptoms of Alzheimer’s disease are not usually recommended for other forms of dementia because the evidence for their effectiveness is limited and, in some cases, may make symptoms worse.

One exception is for people living with Dementia with Lewy bodies who have problems, such as delusions or hallucinations, which are causing them significant distress or leading to challenging behaviour.

Medication to lower your blood pressure, reduce cholesterol, help circulation or reduce the likelihood of blood clotting may help delay the progression of vascular dementia. Your doctor will also have to monitor your ongoing blood sugar and cholesterol levels. It is very important for you to stop smoking.

Antipsychotics

People with dementia should not be prescribed antipsychotic drugs unless it is absolutely necessary. As well as the potential side effects, these drugs can accelerate the decline in people’s cognitive abilities and can decrease their quality of life.

There is good evidence that alternative approaches are effective and have no side effects. This will often involve: 

• more detailed and individual assessments of the person’s personality and behaviour 
• removing obvious triggers for symptoms, e.g. noise, pain 
• spending more time with the person with dementia 
• recreation and social activities that give meaning to the day 
• alternative therapies such as aromatherapy.

If it is decided that antipsychotics are needed, they should be prescribed at the lowest dose possible, and for as short a time as possible. The person’s health should be closely monitored during that time.