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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 so no two people with dementia are the same.

Being diagnosed with dementia does not mean your life is over. Below are a few practical examples to help you cope with the onset of dementia

Take care of your physical health

It is important that you look after your body as much as possible, try taking part in sensible exercise that you feel comfortable with. Make sure you get a good night’s sleep and try to maintain a healthy diet when possible.

Visit the NHS choices -  Live Well for more information

Talk to your employer if you are still working

Being diagnosed with dementia does not mean you have to give up work, they are currently 42,325 under 65 years of age 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.

Take your medication as prescribed

Avoid any unnecessary changes to your daily regime without seeking medical advice and don’t take any other medication unless prescribed by your doctor without talking to them first.

Try not to use alcohol as a coping tool

While alcohol might make you feel better, this is only a temporary fix. It may also have an effect on any medication you may be taking.

Join a support group

The Alzheimer's society has a wide range of groups in Hull that you can access here on their website

Visit the Alzheimer's society website for more information on services available for to you access

Stay in touch with family and friends.

Still be a part of people’s lives and make sure you attend holiday events, birthday parties, family gatherings and friends groups you are invited to. Talk to the people closest to you about how you feel and ask for any help you feel you may need from them.

Arrange things so they are easy to find

Start putting labels on drawers and doors so you know where things are, Try to have a specific place for each of your belongings and make sure they are put back in the same place.

Continue to take part

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 noval. Try talking to freinds, family and group leaders whose activities you attend to see what adaptations can be made to your hobbies.. You can find lots of inclusive groups and activities in our local directory.

Go to our local groups and activities directory

Attempt difficult tasks when you feel you are at your best

Make sure you give yourself enough time to complete them and if you feel it’s getting to hard, take a break or ask a friend or relative for help.

Keep a diary

Keep a written schedule of all your appointments, activities, daily tasks etc. and keep names and contact details of the people who you may wish to contact. Make sure you write down emergency phone numbers, along with people who need to be called and keep it with you in case of emergencies.

Plan for the future

Make sure you talk to your family and loved ones about how you want your affairs to be handled. Tell them about your medical preferences, put in place a trusted person to handle your affairs when the time comes you can no longer care for yourself and discuss any adaptions or alternative accommodation options that may be required.

It is a good idea to draft a Lasting power of Attorney (LPA) before you lose capacity. A LPA is a legal document that lets you appoint one or more people to help you make decisions or to make decisions on your behalf. You must complete a LPA before you lose capacity in order for it to be a lega binding document.

Advocacy

An advocate can be a friend, a family member of a carer. The important thing is that they know you well and, are able to put your thoughts, needs and wants across when you are unable to.

Aside form people who know you well, there are also professional advocacy services, such as solicitors, money management advocates like the Citizens Advice Bureau and; services like your local Healthwatch who can advocate your experiences and concerns relating to the health and social care services you receive.

If you are unsure whether you or a person you know or care for, would benefit from an advocate then try searching for local "advocacy" in the directory to start to a conversation with someone who can inform you further.

The Mental Capacity Act 2005 (MCA) covers people in England and Wales who can’t make some or all decisions for themselves. The ability to understand and make a decision when it needs to be made is called ‘mental capacity’

If you think a person you care may lack capacity to make decisions about money, health and other matters. You may need to help them to make those decisions or you may have to take action or make decisions on their behalf. The MCA sets out what should happen when someone lacks capacity to make decisions.

Find out more at GOV.UK -Mental Capacity Act 2005

Lasting Power of Attorney

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.

This gives you more control over what happens to you if you have an accident or an illness and can’t make your own decisions (you ‘lack mental capacity’).

You must be 18 or over and have mental capacity (the ability to make your own decisions) when you make your LPA.

You don’t need to live in the UK or be a British citizen.

There are 2 types of LPA:

  • health and welfare;
  • property and financial affairs

You can choose to make one type or both.

LPAs have replaced the existing Enduring Power of Attorney (EPA). EPA's  are still valid, but you may wish to create an LPA to include your health and welfare decisions.

Both types of Lasting Power of Attorney must be created in a specific format. You can obtain the forms from the Office of the Public Guardian or you can instruct a solicitor to prepare one for you. Contact them for a form using the details given below, or you can download one from the Office of the Public Guardian website using the link provided.

An LPA can be cancelled at any time, but only before you lose mental capacity.

Visit the GOV.UK - becoming a deputy here

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

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.

You can contact Hull Memory Clinic at -

39 - 41 Coltman Street

Hull

HU3 2SG

Tel: 01482 336 617

Visit the Humber NHS memory Clinic website using the link provided for further advice and information

Alzheimer's

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.

Visit the website Alzheimers UK website using the link provided for more information.

Age UK

Age UK is the country's largest charity dedicated to 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.

Visit the Age UK website to find out about the range of services that you can access.

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 percent of all people living with dementia. They also hope to provide a community focus for those who suffer from dementia with Lewy bodies (DLB) along with their carer’s and families

Visit the Lewy Body Society website using the link provided for more information about the disease and its impact

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.

Visit the website to find out more about the Butterfly scheme for people with dementia or mental impairment

Last reviewed: 11/10/2017

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