What is dementia?
Dementia is not a disease itself. It is a description of the range of symptoms caused by progressive damage to the brain which increase over time. These symptoms include memory loss, confusion, mood changes and communication difficulties. There are different medical conditions which cause dementia. The most common are:
Is the most common form of dementia. It is more common as we get older but is not a part of normal ageing.
Alzheimer’s disease causes changes that go beyond normal ageing such as a build-up of proteins in the brain. As Alzheimer’s progresses, it causes increased damage in the brain which in turn increases the severity of the symptoms (leading to dementia).
Is the second most common form of dementia. It occurs when blood flow to brain cells is reduced, resulting in the symptoms of dementia.
If the memory and thinking problems caused by the reduced blood flow is not severe enough to be considered dementia, it is called vascular cognitive impairment.
Dementia with Lewy bodies (DLB)
Is the third most common form of dementia. It is caused by clumps of protein building up inside nerve cells in the brain which damage the way they function and communicate. The nerve cells that are affected are in areas of the brain that control thinking, memory and movement. People with DLB can also show some changes in the brain that are typical of Alzheimer’s. This sometimes makes it hard to tell the difference between the two diseases.
Will I get better?
Unfortunately, dementia is a deteriorating condition which will not get better. However, if we diagnose early it is possible to prescribe medication to slow down the progression and manage many of the symptoms that you may experience.
It is possible to live well with your dementia diagnosis and we will work closely with you and your family to achieve this.
How will medication help?
The medication is to try to slow down the progression of symptoms. These include worsening mental abilities (such as disorientation) and problems carrying out daily activities such as getting dressed.
Information about the medication that you have been prescribed will be given to you when you collect your medication.
How will my condition progress?
How quickly each person’s dementia progresses and the path it takes is unique to them.
Health professionals use a range of clinical scales to measure mental ability and overall functioning. These are used, alongside a holistic view of the person’s capabilities and needs, to monitor any change.
Is dementia hereditary?
Alzheimer’s is common, and many people have a relative who has the disease. This doesn’t mean they will inherit it. Some research has suggested that if someone has a parent or grandparent with Alzheimer’s who developed the disease over the age of 65, then their own risk of developing Alzheimer’s may be slightly higher than someone with no family history.
Research has identified several genes that are associated with a higher risk of late onset Alzheimer’s in some people. Having these genes does not definitely mean someone will develop the disease, only that their risk is higher than those with a different genetic make-up.
In some instances, early onset Alzheimer’s can run in families and may be caused by faulty genes. In these cases, many members of the same side of the family are affected, often in their 30s, 40s or 50s. These types of Alzheimer’s are very rare. For more information visit the web site: www.alzheimersresearchuk.org/aboutdementia/helpful-information/genes-and-dementia/
Who do I contact for advice or if I have a question? What services and support are available to me?
If you have any questions do not hesitate to contact your GP.
The Alzheimer’s Society has a wide range of high quality information and can offer free independent advice.
How do I obtain care and support?
Your GP will discuss your care needs and support options at any time. Do not hesitate to call them if you have any questions or if your needs change.
Your local Council will have details of a wide range of support and social organisations.
Will mental or brain stimulation exercises (brain training) help to slow down my deterioration?
Many people engage in ‘brain training’ activities such as: crosswords, puzzles or learning new hobbies. There are also many computer based ‘brain training’ games which also challenge memory, problem solving and reasoning. The idea is the more you use your brain the more resilient it will become. In common phrasing, “use it or lose it”.
This is a new area of research and according to the Alzheimer Society, “most studies have been too small and too short to test any effect of ‘brain training’ on the development of cognitive decline or dementia.”
Some studies have found that ‘brain training’ improves some aspects of memory and thinking and may help older people manage their daily tasks better. But none have shown it prevents dementia.
What support is available for carers?
Carers are entitled to a carers assessment carried out by the local Council. This identifies their needs and signposts them to the support they can access. It does not judge or assess their ability as a carer.
What benefits or help can I get?
The benefit system is complex and it is always advisable to get high quality accredited advice. Citizens Advice offers free, confidential advice on a range of benefits.
Benefits are paid to many people with dementia who need regular help with personal care. They are non means tested and are paid regardless of any other income or savings.
Some people with dementia may be eligible for discounts or exemptions on their council tax. Contact your Council for more information or to apply for a discount or exemption.
Many people with dementia are entitled to a blue badge so they, or their carer, can park close to where they need to be.
However, the blue badge criteria focuses on mobility needs, so some people with dementia may find it difficult to meet the conditions. For many people their dementia affects balance, co-ordination and spatial awareness which need to be stressed when applying for a blue badge. Applications can be made by contacting your local Council
Do I have to contact social services?
Your initial assessment will consider if your needs require a referral to social services and if you and your carer agree it is necessary
The social services referral and carer’s assessment will be revisited during your post diagnostic visit by the nurse.
Can I continue to live at home or do I need to enter a care home?
Dementia makes many things more difficult, especially as it progresses. However, many people with dementia, especially in the early and middle stages, continue to live safely in their own home.
There is a wide range of equipment and ‘assistive technology’ that may help.
Simple tips which may help include:
- Good lighting, use a night light or leave the bathroom light on
- Remove all trip hazards (such as loose rugs) and clutter
- Leave a set of house keys with a neighbour you trust (or install a “key safe” outside your house)
- Keep a list of emergency telephone numbers by the phone (or save them on your phone if this is easier).
Can I obtain any financial assistance?
NHS services are free at the point of care, but those provided by a local authority, including residential home charges are means tested.
However, there are some services which a local authority cannot charge for. These include aids and minor adaptations to the home costing less than £1,000.
What is Lasting Power of Attorney?
Lasting power of attorney (LPA) allows one person to give another, known as the Attorney (often a family member or carer) the authority to make decisions on their behalf.
An LPA can only be taken out by people aged over 18 who have the mental capacity to do so. If a person no longer has mental capacity, they cannot make an LPA.
Having an LPA makes things easier and less expensive should family or friends need to make any decisions on your behalf in the future. Some people use the LPA as a way to begin talking about their wishes for the future with family or friends.
There are two types of LPA, Property and Affairs for financial decisions and another for Health and Welfare decisions. You can choose to make both or just one. You can appoint the same person to be your attorney for both or you can have different attorneys.
The National Dementia Helpline provides support to complete LPA forms, but cannot offer advice. Tel: 0300 222 11 22.
Some people choose to pay for independent legal advice from a solicitor but this is not always necessary, especially in straight forward cases.
Can I still drive with dementia?
The legal position focuses on the individual’s ability to drive safely rather than any specific diagnosis such as dementia.
Do I have to inform the DVLA?
If you are diagnosed with dementia and want to continue driving, you must immediately inform the DVLA of your diagnosis on form CG1 available online: www.gov.uk/government/publications/cg1-online-confidentialmedical-information
Failure to do so can result in a £1000 fine.
Once informed, the DVLA will ask you to complete a questionnaire and will ask your permission to obtain a medical report from your GP and/or consultant. To see the questionnaire go to: www.gov.uk/alzheimers-disease-and-driving
The DVLA will make a decision based on what your doctor says. They may decide to:
- Renew your licence. This is usually for one year
- Revoke (cancel) your licence immediately
- Obtain more information. This may be more medical reports, or they may ask you to take an assessment, including an “on road driving assessment”.
You can ask for a copy of the report detailing the DVLA decision with reasons.
Do I have to inform my car insurance company of my diagnosis?
Yes. As soon as you’ve been diagnosed with dementia, you should inform your car insurance provider. If you don’t, your policy may be invalid.
Advice from other carers
- “Do your own research”
- “Join service user/carer groups”
- “Speak to as many people as possible, don’t be scared to ask questions”
- “Don’t worry about contacting social services, GP or memory service at any stage”
- “Request that social services carry out a survey of your home to identify and supply free of charge any items of equipment which may both assist you and keep you safe”
- “Stimulation for the service user can really help, such as dementia cafes, day care centres or the Salvation Army”
- “Develop your own strategies to help protect yourself and the person you are caring for”
- “Take care of yourself!”
We would like to thank Elaine and Chris, both carers of people living with dementia, for their invaluable help in creating these resources for patients and families.