Dementia

What is dementia?

The term ‘dementia’ describes a set of symptoms that overtime can affect memory, problem-solving, language and behaviour. These symptoms occur when the brain is damaged by certain diseases, including Alzheimer’s disease and damage caused by problems with blood supply to parts of the brain (Vascular dementia).

Dementia is not a natural part of ageing. Dementia is progressive, which means the symptoms will gradually get worse. How fast dementia progresses will depend on the individual person and what type of dementia they have. Each person is unique and will experience dementia in his/her own way. Often, the person’s family and friends are more concerned about the symptoms than the person may be themselves.

Symptoms of dementia may include the following:

• Loss of memory − particularly short-term memory, for example forgetting what happened earlier in the day, not being able to recall conversations, being repetitive, or forgetting the way home from the shops. Long-term memory is usually still quite good.
• Concentrating, planning or organising − for example difficulties making decisions , problem solving or carrying out a sequence of tasks like cooking a meal.
• Mood changes − people with dementia may be withdrawn, sad, frightened or angry about what is happening to them.
• Communication problems − including problems finding the right words for things, for example being able to describe the function of an item instead of naming it. There may also be difficulties following conversations.

What causes dementia?

There are several diseases and conditions that result in dementia:

• Alzheimer’s disease – This is the most common cause of dementia. During the course of the disease the chemistry and structure of the brain changes. One key cause is that proteins do not form properly and join together into ‘plaques’ and ‘tangles’ that stop nerve cells from working and communicating with each other properly. Over time the brain cells die and certain parts of the brain shrink. Symptoms may include difficulties finding the right words, solving problems and making decisions.
• Vascular dementia − If the oxygen supply to the brain is reduced due to narrowing or blockages of blood vessels some brain cells become damaged or die and this can cause the symptoms of vascular dementia. These symptoms can occur either suddenly, after a stroke, or over time through a series of small strokes. Symptoms may vary but can overlap with Alzheimer’s disease. People may have difficulty with problem-solving, planning , thinking quickly and concentrating.
• Mixed dementia − This is when someone has more than one type and a mixture of symptoms. It is common for someone to have both Alzheimer’s and Vascular dementia together.
• Dementia with Lewy bodies − This form of dementia gets its name from tiny abnormal structures that develop inside nerve cells. Their presence in the brain disrupts the chemistry and leads to the death of brain cells. Symptoms can include disorientation and hallucinations, as well as problems with planning, reasoning, and problem solving. Memory may be affected to a lesser degree. This form of dementia shares some characteristics with Parkinson’s disease.
• Frontotemporal dementia − In this dementia damage is usually focused in the front part of the brain caused by abnormal proteins forming inside brain cells, causing them to die. At first, personality and behaviour changes are the most obvious signs.

There are many other conditions which may cause dementia.

In later stages of dementia, the person affected will have problems carrying out everyday tasks and will become increasingly dependent on other people. However, many people live well with dementia following their diagnosis. For more information about dementia look at the Alzheimer’s Society Website.

Diagnosing dementia

It is very important to get a proper diagnosis. It is possible to be prescribed medication to slow down or help with symptoms e.g. in Alzheimer’s disease. Whether you are someone with dementia or a carer, a diagnosis can help with preparing and planning for the future.

Dementia can be diagnosed by a specialist, who should rule out any illnesses that might have similar symptoms to dementia, including depression and delirium (or not their usual self), when a person can become confused during an episode of ill health. The doctor may carry out a number of tests to check basic thinking processes and the ability to perform daily tasks. They may request further tests, such as a brain scan or a more in-depth assessment of memory, concentration and thinking skills.

Forget-Me-Not Scheme

The Forget-Me-Not Scheme makes sure that hospital staff are able to recognise each person with known or suspected dementia so that they can provide special care. Components of the scheme are summarized briefly below.

Forget-Me-Not visual alert magnet

People with known or suspected dementia will have a forget-me-not visual alert symbol on the name board at the end of the bed or behind the head board (with the consent of the person or carer when possible). This highlights to staff that these people are likely to require special care planned around the persons unique needs.

This Is Me (Alzheimer’s Society)

This leaflet summarizes information about each person, such as his/her likes and dislikes, so that staff can provide effective care adapted to each persons unique needs. If not already completed before admission a member of staff will provide a form to be filled in by the person and his/her carer or relative. With permission, staff will refer to the information to guide how they provide care. We recommend that each person with dementia fills in this leaflet with assistance from a carer or relative. The leaflet also contains information about the person’s life including hobbies and a biography. Please do keep the original document safe and make a copy to give to staff whenever you need to come to hospital.

John’s Campaign

Leeds Teaching Hospital NHS Trust is signed up to John’s campaign which asks for families and carers of patients to be invited to stay with them in hospital for as many hours as needed and they are able to give. Please discuss with the Nurse In Charge.

Carers

The Leeds Teaching Hospital NHS Trust greatly values the support of family and friends caring for people who use our services and we recognise carers as expert partners in care. In the best interest of the patient, we welcome carers staying with the person they support outside of normal visiting hours, should they and the patient so wish. Please discuss with the nurse in charge and ask if you can have a Carers passport.

If you are a carer that works for Leeds Teaching Hospitals NHS Trust talk to your manager about your caring responsibility and complete the Working Carers Passport. Also visit the Staff Health and Wellbeing intranet page:

Carer’s Survey

We collect feedback from patients and carers using a questionnaire. We greatly value all comments and will use them to strive to improve the experience of our patients and their carers. Please fill in a survey found at the back of the leaflet and return it to the ward receptionist or member of staff. There is also an online version.

Hospital Tips for Carers

Let the team know if you wish to help care and support the person with dementia. Your personal knowledge and experience of the person is extremely valuable to the whole team.

• Complete a This is Me and let the staff have a copy.
• Ensure the person has their dentures, glasses, and hearing aids available and in use as much as possible while in the hospital. It is helpful for these to be marked with the persons name.
• If the person has not brought a list of medications with them on admission please let staff know what the medications are. It is also useful for us to know if someone helps the person to take their medications or does if for them who that person is and how we would contact them.
• Personalise the person’s environment. Familiar items such as photo albums, a favourite stuffed animal, a blanket from home or activity they enjoy can alleviate anxiety commonly experienced in the unfamiliar hospital environment. Please consult staff first about items you wish to bring in.
• Notify staff if you notice a change in the person’s usual behaviour. For example, notify staff if the person is not alert as usual, or displays behaviour that is not typical of the way they normally behave at home (e.g. hallucinating), or a mix of both.
• Notify Staff if you think the person would prefer a finger food menu choice.
• Get connected with your community for additional dementia information and support.
• Please bring in comfortable, easy to put on clothes for the person and good fitting footwear to help us keep the person as active as possible.
• If you are worried about anything please speak to the Nurse In Charge.

Who to Contact

If you care for someone with dementia and worry they might go missing look at the Herbert Protocol.

Dementia Carers’ Survey

Leeds Teaching Hospitals want to ensure that carers of people with dementia and other memory problems feel well supported. We would greatly value feedback on the service we provide carers and would appreciate it if you could take a few minutes of your time to complete our online survey:

Acknowledgements:
Alzheimer’s Society online factsheets 2017 (www.alzheimers.org.uk)
Hillingdon Hospitals Foundation NHS Trust
Paul Smithson The Alzheimer’s Society Dementia Connect Local Services Manager (Leeds and Kirklees) West Yorkshire