Dementia – A Guide

Focus on Disability - For Disabled People, the Elderly and their Carers in the UK

Dementia is used to describe the symptoms that occur when the brain is affected by conditions including Alzheimer’s disease, stroke and other rarer conditions.

See also:
Alzheimer’s Disease


The Symptoms of dementia include:

* loss of memory
* confusion
* problems with speech and understanding

Our skills and abilities are governed by different parts of the brain. In people with Alzheimer’s disease a direct result of the way the disease has affected the brain are changes in behaviours,memory and thought. The changes are not yet understood, there is no cure for dementia and little treatment, although new drugs may temporarily relieve some of the symptoms of Alzheimer’s disease.

It is important to get a proper diagnosis of dementia as the symptoms may be from a disorder that is curable.

Dementia does not cause death on it’s own and someone may live with dementia for several years before dying from another medical problem.


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The two most common types:

* Alzheimer’s disease occurs due to changes in the brain structure leading to cell death. the onset of the disease is gradual with a slow and regular decline.
* The second main type of dementia is caused by mini strokes in the brain which destroys small areas of cells and is called “vascular dementia”. The onset may be sudden and although the person may not become worse for periods of time or even improve, decline is the eventual outcome. Some people may have both types together.

Other types of Dementia include:

* Lewy body dementia
* Pick’s disease
* Huntingdon’s disease
* Creutzfeldt-Jacob Disease (CJD)


Usually a disease of older people with:
6 in 100 people over the age of 65 developing it to some degree.
20 in 100 people over 85 developing dementia.
An estimated 18,500 people under 65 have the condition in the UK.


Anyone being incapacitated by dementia is entitled to financial help from the benefits system if their incapacity fits the criteria to receive the award of that benefit.

see Benefits and Allowances for Disabled People and Benefit Rates

Notes on the Causes of dementia

* In most cases dementia is not thought to be inherited.
* Although dementia becomes more common with increasing age, this should not be seen as part of the ageing process, nor is it caused by old age.
* Major life changes, such as the death of a loved one will not cause dementia.
* There is no evidence to support any belief that dementia is infectious or sexually transmitted.
* It is not caused by over or under use of the brain – research does suggest that keeping the brain active can reduce the risk of dementia.

The Symptoms of Dementia

A main symptom a person with dementia will display is consistently forgetting things they have just said or done. their memory of the distant past may remain quite clear. Short term memory loss is always a feature of dementia, although it may not be noticeable for some time after the onset of the disease.

Some people become docile and even tempered with dementia while others may become disagreeable and more difficult to live with. Some people will become physically disabled while others manage for themselves with little help for a long time.

As the disease progresses, people with dementia may:

* Become very forgetful about recent events and people’s names
* Be confused about the time, day and unable to find their way around familiar places.
* Find difficulty in talking, and often repeat themselves.
* Have difficulty understanding what’s said to them.
* Have problems with household tasks and personal hygiene.
* Behave inappropriately, such as going out in their nightclothes or wandering the streets at night.
* Hide or lose things and accuse others of stealing them.
* See and hear things that are not there.
* Be easily angered, upset or aggressive.

* Be unable to remember things they have just said or done.
* Not recognize people close to them and familiar objects.
* Be unable to express themselves.
* Be unable to understand what is said to them.
* Become restless, especially at night.
* Try to carry out actions or events from the past.
* Require a lot of help with household and personal hygiene tasks.
* Become incontinent.
* Need a wheelchair.
* Be bedridden.

The Importance of a Diagnosis

A diagnosis is essential to:

* Rule out other conditions that may have symptoms similar to dementia and that may be treatable. These include depression, severe constipation, vitamin and thyroid deficiencies and brain tumours.

* Rule out other possible causes of confusion, such as poor sight or hearing, emotional changes and upsets, such as moving house or bereavement, or the side effects of certain drugs or a combination of drugs.

* Access advice, information and support from social services, voluntary agencies and support groups.

* Allow the person with dementia to plan and make arrangements for the future.

Depression and Dementia.

The symptoms of dementia and depression, including withdrawal from social activities and general apathy, may seem very similar. An older person with severe depresssion occasionally may be misdiagnosed as having dementia.
The situation is further complicated by the fact that the person with dementia may also be depressed. Dealing with the consequences of a diagnosis of dementia, a major life event itself, may trigger the onset of depression. there may be a sense of loss and a period of coming to terms with the diagnosis.

Some things Carers have found useful:

The suggestions below may be helpful for a carer of a person in the earlier stages of dementia.
Comprehensive advice on caring for someone with dementia is beyond the scope of this webpage and contacts at the bottom of the page may be useful or one of the books to the right.

* Frequently remind the person with dementia of the time, day and where they are.
* Keep a clock with a large clear dial on view.
* Keep a calendar that can be changed by the day, month and year.
* Label the doors of rooms, such as the bedroom and toilet, with words, pictures and colours.
* Keep photos of familiar people and the family on view.
* Leave the personal possessions of the person with dementia where they can easily find them.
* Keep furniture in the same place.
* Keep checklists of things to do that day, or lists of expected visitors, which can be ticked off.
* Set things out in the order they have to be done.
* leave out only the things required, for example, one day’s drug supply.
* Leave a simple, clear note with an address if you are going out.
* Don’t forget textures, tastes and smells can also evoke memories.

Legal Issues

You can get a form from Jobcentre Plus, which allows you to collect the pension and benefits of a person with dementia.

it is important to obtain advice about Enduring and Lasting Power of Attorney and the court of Protection at the earliest opportunity (see below). Understanding bank managers and others who require a person with dementia’s signature on documents may allow you to sign on their behalf. It would be a good idea to get a joint bank account if you do not already have one.

However, it is not wise to allow the situation to drift along. if the person’s affairs are complicated ( for example, if they own a business or property), you should get expert legal advice as soon as possible about any possible problems before they arise. For example, spouses who own their home jointly may find that they are unable to sell it or, if they do, that they are not entitled to all the proceeds of the sale.

English law provides two ways for a person’s affairs to be taken over. The first is Enduring and lasting Power of Attorney. The second is the Court of Protection.

Enduring Power of Attorney

This give one the legal right to manage another’s financial affairs. the Enduring Power of Attorney Act 1985 made it possible to appoint an attorney who has the power to act after the person becomes mentally incapacitated. Since the Mental Health Capacity Act 2005 came fully into force on 1st October 2007, the only Enduring Powers of Attorney that can still be registered are those that were made before 1st October 2007. No Enduring Power of Attorney made on or after 1st October 2007 can be registered. The person had to be mentally capable when creating this power.

Lasting Power of Attorney

The Mental Capacity Act 2005 allows a person to appoint a Lasting Power of Attorney (LPA) to act on their behalf if they should lose capacity in the future. This is like an Enduring Power of Attorney (EPA), but the Act also allows people to let an attorney make health and welfare decisions but they have to create two seperate LPA’s if they wish to have both.
see page: Making a Lasting Power of Attorney.

The Court of Protection

The Act also created a new Court of Protection which has jurisdiction relating to the whole Act and will be the final arbiter for capacity matters. It has its own procedures and nominated judges.


The Act also provides for a system of court-appointed deputies to replace the previous system of receivership in the Court of protection. Deputies will be able to take decisions on welfare. health care and financial matters as authorised by the court. They will only be appointed if the Court cannot make a one-off decision to resolve the issues.

Office of the Public Guardian

A new Office of the Public Guardian is responsible for registering the authority for Enduring and Lasting Powers of Attorney, for monitoring them and for supervising deputies appointed by the Court.

The Mental Capacity Act 2005 was fully implemented in October 2007. Information on decision making including Enduring and Lasting Power of Attorney and applications for appointing a Deputy are available through the Office of the Public Guardian. Their address is Archway Tower, 2 Junction Rd, London N19 5SZ and they can be reached by phoning Customer Services on 0300 456 0300 or visiting their website at You could go to your Citizen’s Advice Bureau, Neighbourhood Law Centre or family solicitor for advice on these matters.


Some of the organisations below publish their own material on dementia and caring for people at home. Some run groups for carers. These are national organisations and many can provide details of local groups.

Age UK England
Tavis House, 1-6 Tavistock Square, London, WC1H 9NA
Information Line: 0800 169 6565

Age UK Scotland
Causewayside House, 160 Causewayside, Edinburgh EH9 1PR
Phone: 0800 4 70 80 90


Age UK Northern Ireland
3 Lower Crescent Belfast BT1 1NR
Phone: 0808 808 7575

Age UK Cymru
Ty John Pathy, 13-14 Neptune Court, Vanguard Way, Cardiff CF24 5PJ
Phone: 029 2043 1555

Find your nearest Age UK
Alzheimer’s Society
Devon House, 58 St Katherine’s Way, London E1W 1JX
National Dementia Helpline: 0300 222 11 22


Alhzeimers Scotland
22 Drumsheugh Gardens, Edinburgh EH3 7RN
National Dementia Helpline: 0131 243 1453

Carers UK
20 Great Dover Street, London SE1 4LX
Helpline:020 7378 4999

Elder Abuse Response Line
Phone:0808 808 8141

Mind ( National Association for Mental Health )
15-19 Broadway, Stratford, London E15 4BQ
Infoline: 0300 123 3393


For extra information see the Super Carers guide – A guide to living with dementia