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Dementia

What is dementia?

It is estimated that over 2,900 people are currently living with dementia in Hull, with approximately 1,800 people formally diagnosed and recorded on GP dementia registers. Both of these figures are expected to increase by approximately 1,000 by 2020.

Dementia is not a natural part of ageing it is a progressive disease of the brain. The term 'dementia' describes a loss of mental ability associated with the gradual death of brain cells and it affects each individual differently.

Use the links below to access a range of easy read documents to help you understand dementia.

What is dementia?

A guide to dementia

A guide to dementia 2

Let’s talk about dementia

Living with dementia - Information for carers and families

Being diagnosed with dementia does not mean your life is over. There are lots of things you can do to help you stay independent for as long as possible.

Dementia guide

The dementia guide has been created by Alzheimer’s UK and is for anyone who has recently been told they have dementia. The guide has lots of information about dementia and the treatments. It also has a range of support and services that are available. The information in the guide will help you to live your life and plan for the future.

Download a copy of the Dementia guide here

Listen to the guide via Soundcloud

Order a CD copy here

Order a braille copy here

Request an alternative language here

Living with Dementia

Many people use different approaches to help them deal with their memory problems.

Here are a few suggestions you can use to help you with your memory –

  • plan ahead to remind you to complete daily tasks
  • focus on one thing at a time to give you the best opportunity to complete the task
  • break tasks into smaller steps to help you focus and manage the tasks you need to complete
  • keep important things such as keys, glasses and wallets. in one place so you know where they are
  • try to keep the layout of your home familiar so that you know where things are
  • try to complete tasks in quiet areas that has no detractions as this can improve the likelihood of completing tasks
  • try to do the most challenging things early in the day, when you have most energy and can concentrate best
  • take breaks and avoid doing tasks when you are tired

You can find out more information about living with memory problems and the use of these coping strategies at Alzheimer’s UK by using the link provided. 

Find out more about living with memory problems here

Dementia Support groups and hobbies

Try not to give up on the things you enjoy. You may need to adapt some activities if they become harder to do, such as using books on tape instead of reading a novel. Try talking to friends, family and group leaders whose activities you attend to see what adaptations can be made to your hobbies.

You can visit our local groups and activities directory and use our dementia filter to find dementia friendly support groups.

Search our Community directory here

Dementia and work

Being diagnosed with dementia does not mean you have to give up work, there are currently 42,325 people under the age of who are working and living with dementia. If you are still working, you can seek potential options such as seeing what adaptions can be made within your job and workplace. You may want to consider reducing your hours, early retirement or being transferred to another role which is more flexible to your needs.

Find out more on our legal advice information page here

Young people and Dementia

Young people with Dementia may experience different symptoms than memory loss which is usually associated with older people. Young people may experience problems with vision, language and behaviour.

Find out more about living with young onset dementia here

Staying healthy

Staying healthy is an important part of anyone’s physical health and it may help you to maintain self confidence and memory skills.

More on staying healthy here

Below are a few things you can do to help you to stay healthy.

Stay active

Just because you are living with Dementia does not mean you have to stop doing the things you enjoy. Activities are a great way to meet other people and can improve your quality of life. It can also help to improve your mental health. Try to do 30 minutes exercise for 5 days a week. You may want to join an exercise class to help you maintain your physical health.

Go to our staying active page here

Learn more about keeping active and involved

Find out about practical tips for keeping active

Activity ideas for people living with Dementia

Exercise and mobility with Dementia

Healthy Eating

Eating a balanced diet and having regular mealtimes will go a long way to improving your physical health. Try to eat five portions of fruit and vegetables a day. Don’t forget to keep hydrated by drinking 6 to 8 medium glasses of water a day.

Find out more with eating well with dementia here 

Go to our healthy weight page for more information

Mental health – stress and anxiety

As well as looking after your physical health, it is important that you take notice of your mental health. It is understandable that you feel down or worried at times but there are things you can do to improve your physical health. You can try –

  • keeping your brain active by reading, playing cards or board games, puzzles and quizzes
  • talk to friends and family about your thoughts and feelings – sometimes talking it through can be therapeutic and help relive anxiety
  • make sure you give time for things like hobbies and leisure activities

You can also try some relaxation techniques such as –

  • diaphragmatic or belly breathing – sit or lie and place one hand on your chest, then as you breath slowly and deeply, your belly raises rather than your chest
  • mindful breathing – sit with your eyes closed and just focus on breathing in and out
  • progressive muscle relaxation – where you lie down and then tense, hold and relax different muscle groups in your body
  • guided imagery – where you visualise yourself being somewhere safe and restful

Find out more about mental health here 

Find out more about Dementia, mental health and depression here

Learn more about memory problems and feelings here

Sleep

Having a good night’s sleep is important to maintain good health. Being tired may also make it more difficult for you to concentrate. Here are a few tips you can try to help you maintain a good sleep routine –

  • set an alarm for each day and get up when it goes off
  • avoid long daytime naps as this may cause restlessness at night time
  • avoid eating a heavy meal before going to bed
  • avoid drinks like tea, coffee and fizzy drinks in the evening as the caffeine contained in them can keep you awake
  • avoid doing physical exercise and mental demanding tasks such as crosswords before going to bed.

Once you get into a good routine, it is important that you stick to it as much as possible. Having good sleep has shown to improve memory and help with problem solving.

Find out more about staying healthy with sleep

Alcohol and smoking

Try to avoid using alcohol as a coping tool. It might make you feel better in the short term, but this is only a temporary fix and can damage your body in the long term. It may also have an effect on any medication you may be taking.

Smoking is also harmful to your body and causes many problems to your physical health. There are many things you can do to help you to stop smoking

Find out more about smoking and alcohol with Dementia

Go to our alcohol, drugs and smoking page here

Keeping warm with Dementia

Being cold for any length of time is a serious health risk particularly for older people and those who are inactive and have poor circulation.

Find out more about keeping warm with Dementia here

Visit our keeping warm in winter page here

Other Health Issues and Dementia

People with Dementia may also require additional support for other health issues. It is important that you look after your body including foot care, bone health and maintaining healthy teeth and gums.

Find out more about other health issues and Dementia here

As you get older, you may also experience problems with your eyesight and hearing. There are special techniques opticians can do for people with Dementia to test their eye sight. If you find you are having difficulty with hearing, then ask your GP to refer you for a hearing test.

Find you nearest GP here

Go to our sensory support page here

If you care for someone with Dementia and you are concerned about their eyesight and hearing, then here are some simple things you can do –

  • If the person uses a hearing aid, make sure it's switched on and working properly
  • try to attract the person before speaking to the person
  • try changing the way you say things instead of repeating yourself more loudly
  • tactfully remind them to wear their glasses and check the lenses are clean

Find out more about supporting someone with Dementia and eyesight and hearing problems

Caring for Someone with Dementia

Caring for someone with dementia can include a lot of things. It is important that you take the time to go through this information to help you understand what you need to know and what support is available to you.

Download the easy read factsheet – supporting a person with dementia

Use the links below to find a specific issue relating to caring for someone with dementia –

Caring for someone with dementia

Carers - looking after yourself

Communicating in the later stages of dementia

Getting help and support

Caring in the later stages

Supporting someone with bathing and washing with dementia

Supporting someone with dementia with dressing

Supporting someone with eating and drinking with dementia

You can find local support for carers including how to access a carers’ assessment on our looking after someone information page using the link provided.

Find local support for carers here

Dementia and relationships

Living with dementia is likely to have an impact on the people around you and your relationships. You, your partner and loved ones may find it difficult to adapt to the new changes particularly when someone takes on the role of a carer. You can find further advice and information on dealing with relationships and dementia by using links below –

How might dementia affect your relationships?

Talking about dementia

Coping with other changes

Relationships that were difficult before dementia

Staying connected to the people important to you

Sex, intimacy and dementia

Healthcare and Dementia

As your dementia progresses you may need more support for things like –

  • visiting your GP
  • hospital stays
  • communicating with social care professionals

Below are some ways that can help you when you are receiving health and social care support.

GP support for people with dementia

It is important that you have regular check ups with your own doctor. You should visit them as soon as possible if you have any concerns about your health.

Find out more about how a GP can support you with dementia

The Butterfly Scheme

The Butterfly Scheme allows people whose memory is permanently affected by dementia to make this clear to hospital staff and provides staff with a simple, practical strategy for meeting their needs. The patients receive more effective and appropriate care, reducing their stress levels and increasing their safety and well-being.

The Butterfly scheme should be offered by your healthcare team prior to your hospital stay. However, you can ask to opt into the scheme by telling the hospital staff, or asking for the Butterfly champion or Dementia lead.

Find out more about the Butterfly scheme

‘This is me’ communication tool

This is me is a simple form for anyone receiving professional care who is living with dementia or is experiencing delirium or other communication difficulties. It was created by Alzheimers UK in partnership with the Royal College of Nursing. It works by providing an easy and practical way of recording who you are. The form includes –

  • details on the person’s cultural and family background
  • events
  • people and places from their lives
  • preferences
  • routines
  • personality

Use this form to communicate to your health professionals and to help them get to know who you are and what you like.

Download the ‘This is me’ form here

End of life Care

Dementia is a life limiting illness and as such it is important that you discuss your wishes as early as possible while you can still make a decision for yourself (you still have mental capacity)

Go to our End of Life information page here

Lasting Power of Attorney

As dementia progresses, a person’s mental ability will decline, meaning they will struggle to make decisions for themselves and will eventually lose their mental capacity.

The Mental Capacity Act 2005 covers people in England and Wales who can’t make some or all decisions for themselves. The Mental Capacity Act safeguards people who have lost capacity and ensures that their ‘best interests’ are at the forefront of any decision that is made for them.

In order to give you more control of what happens to you when you can’t make you own decisions, you can draft a Lasting power of Attorney (LPA) before you lose capacity

A Lasting Power of Attorney (LPA) is a legal document that lets you (the ‘donor’) appoint one or more people (known as ‘attorneys’) to help you make decisions or to make decisions on your behalf.

Find out more about Lasting Power of Attorney and Mantel capacity Act

Advocate

You may want to consider an advocate to help you communicate your wishes when you are in discussions with your GP or social care professional. This is called an advocate. There are many different types of advocates depending on your Mental Capacity.

Go to our ‘Someone to speak on our behalf’ page

Support organisations

Below are a few organisations and services that you can contact who offer support and advice for people with Dementia.

Alzheimer's UK

Alzheimer's disease is the most common cause of dementia. The symptoms of Alzheimer's disease progress slowly over several years. They are often similar to those of other conditions and may initially be put down to old age.

The rate at which the symptoms progress differs for each individual and it is not possible to predict exactly how quickly it will get worse.

There are a number of local services on offer to support people affected by dementia, charities such as Alzheimer’s UK provide local information relating to what’s local to you.

In some cases, infections or medications can be responsible for the worsening of symptoms. Anyone with Alzheimer's disease whose symptoms are rapidly getting worse should be seen by a doctor so these causes can be ruled out.

Find out more about Alzheimers UK here

Join the online community here

Find local services near you

Alternatively you can contact them on their national helpline on 03002 221 122

Age UK Hull

Age UK is the country's largest charity dedicated to helping everyone make the most of later life. Age UK has a wide variety of services dedicated to ensure you can get the most out of your later life regardless of any additional needs you may have. The Age UK network comprises around 150 local Age UKs reaching most of England.

Find out about support for older people in Hull

The Humber NHS Memory Clinic

The Hull memory Clinic provides a specialist service for people of all ages, aiming to meet the needs of people who are concerned they may have a memory problem. The team also work with the person’s supporter to make sure a quality assessment and treatment process that takes everyone’s needs into account.

The Memory Clinic accepts referrals primarily from GPs, but it also accepts referrals from other agencies as well as service users themselves or their supporters.

Find out about Humber Memory Clinic here

Alternatively, you can contact them by telephone on 01482 336 617
In person -

39 - 41 Coltman Street

Hull

HU3 2SG

Butterflies Support groups

Butterflies (not to be confused with the Butterfly scheme) offer a series of support groups and activities for people living with dementia, along with family and carers. You can find all the Butterflies support groups on our local groups and activities directory.

Visit the Butterflies website here

Lewy Body Disease

Lewy Body disease or LBD is the second most common form of age-related neurodegenerative dementia after Alzheimer’s, accounting for approximately 15 – 20% of all people living with dementia. The society hope to provide a community focus for those who suffer from dementia with Lewy bodies (DLB) along with their carer’s and families.

Find out more about Lewy Body Disease here

Dementia UK Admiral Nurses

Admiral Nurses provide the specialist dementia support that families need. They work in the community, in care homes, in hospices and hospitals.

You can contact the Admiral Nurse Dementia Helpline to raise questions or concerns about dementia and find local services near you -

Young Dementia

Young Dementia UK is a charity that helps people whose lives are affected by young onset dementia. You can find a wide range of resources and support, including the Young dementia network. This network offers –

  • access to young onset dementia information, guidance and tools
  • regular newsletters including young onset specific information, events and research
  • events around the UK and online
  • opportunities to raise awareness of young onset dementia.

Join the Young dementia network here

Equipment and Adaptations

You may want to purchase some equipment and adaptions to help you with your daily routine.

Visit our equipment and adaptations page here

Download the Making your home dementia friendly here

Memory aids

Using a memory Aid may help you to manage your dementia in the early stages. Here are a few examples of things you can try -

  • wallchart, calendar or noticeboard - anywhere in your home to remind you to do a one-off task
  • sticky notes - place these around house to remind you of tasks that need completing
  • permanent signs - for example a laminated A4 sheet, to remind you of things you need to do regularly
  • medication box - a box with different compartments for each day and times of the day where you separate your medication so you know what to take and when
  • labelling - on cupboards and doors to remind you where things are
  • colour codes – using different colour codes for things like keys
  • journal - write a few sentences or stick photos in a daily journal. You can look back in it to remind you what you have done or how you felt

These are just a few of things you can use as memory aids. It is important that you find a solution that works for you. This may require some trial and error.

You can find out more about traditional memory aids here

Electronic memory aids

There is also a wide variety of electronic memory aids that are available to support people living with dementia. Here are some examples of electronic memory aids –

  • alarm clock or watch
  • mobile phones
  • computer and tablet device
  • apps – most smartphones have calendars, address books and diaries already installed
  • prompt and reminder devices – sensors that detect movement and then play a reminder for example leaving the house might remind you to lock the door
  • GPS and Locator – devices to help you find mislaid items such as wallet or keys 

Again, these are just a few examples of electronic devices that can be used as memory aids. You may already own some of these devices as part of your daily routine. You can try using them to help you aid your memory.

Find out more about electronic memory aids here

ID jewellery

ID jerwellery can carry personal details such as name, address and your key contact. You can find a variety of ID jewellery at Medic Alert which is a registered charity.

Visit Medic Alert here

Alzheimer’s UK Online shop

Alzheimer’s UK has an online shop which you can use to purchase some useful equipment and adaptations. The money which they raise goes to trying to find a cure for dementia.

Visit Alzheimers UK online shop here

Alternatively, you can contact them by telephone on 03001 240 90

Mobile Apps to support people living with Dementia

Mobile Apps are applications that you can download to your smartphone or tablet device to help you perform a task. The following apps can support you and your carer with your daily routine. - 

Alzheimer’s Card app

Balance: for Alzheimer’s Caregivers app

Carezone app

Daily Companion app

Food Allergy Journal app

Fingerprint Magic app

iPill medication app

Knome app for apple devices

Medication Reminder app

MindMate support app

Myhomehelper app

Young Onset Dementia app

Home Care

As dementia progresses, you may feel you that you need additional support to help you live your life. This could be support to have help around the house such as DIY or gardening, to more formal support such as a homecare provider.

You can find a whole host of support on our ‘care and support at home’ page, including a directory of homecare agencies.

Go to our help to care and support at home page here

Last reviewed: 28/03/2018

Links

Activity ideas for people living with Dementia

Age UK Hull

A guide to dementia

A guide to dementia 2

Alcohol, drugs and smoking page here

Alzheimers UK

Butterflies

Caring for someone with dementia

Carers - looking after yourself

Caring in the later stages

Communicating in the later stages of dementia

Community directory

Coping with other changes

Dementia guide

Dementia, mental health and depression

End of Life

Exercise and mobility with Dementia

Find you nearest GP

Find local services near you

Getting help and support

GP support with dementia

Health issues and Dementia

How might dementia affect your relationships?

Humber Memory Clinic

Keeping warm with Dementia

Keeping warm in winter

Lasting Power of Attorney and Mantel capacity Act

Legal advice

Let’s talk about dementia

Lewy Body Disease

Living with dementia - Information for carers and families

Living with memory problems

Memory problems and feelings here

Mental health

Practical tips for keeping active

Relationships that were difficult before dementia

Sensory support

Sex, intimacy and dementia

Smoking and alcohol with Dementia

Staying active

Staying connected to the people important to you

Staying healthy with sleep

Staying healthy

Supporting someone with Dementia and eyesight and hearing problems

Supporting someone with bathing and washing with dementia

Supporting someone with dementia with dressing

Supporting someone with eating and drinking with dementia

Talking about dementia

The Butterfly scheme

This is me’ form

What is dementia?

Young dementia network

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