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Dementia Support 

Dementia photo

Dementia is the term used to cover a number of conditions. It is progressive and describes a collection of symptoms that may include memory loss and difficulties with thinking, problem-solving or language.

In 2012, the Government launched a national challenge to fight dementia and deliver sustained improvements in health and care, creating dementia-friendly communities and boosting dementia research.

The ambition is that, by 2020, England will be:
  • the best country in the world for dementia care and support and for people with dementia, their carers and families to live
  • the best place in the world to undertake research into dementia and other neurodegenerative diseases.

Dementia is an umbrella term used to describe a range of progressive neurological disorders. Alzheimer’s disease and vascular dementia are the most prevalent, accounting for 79% of all diagnoses.

Other forms include frontotemporal, Lewy body, Parkinson’s disease, corticobasal degeneration, Creutzfeldt–Jakob disease and young-onset dementia (Alzheimer’s Society 2017, Dementia UK 2017). Symptoms include change of thinking speed, mental agility, language, understanding, judgement as well as memory loss, but each affected person will experience dementia differently. 

Dementia is caused when the brain is damaged by diseases, such as Alzheimer's disease or a series of strokes. The symptoms of dementia will usually get gradually worse. How quickly this occurs will depend on the general health of the person with dementia and on the type of dementia they have.

There are 850,000 people with dementia in the UK, with numbers set to rise to over 1 million by 2025.

225,000 will develop dementia this year, that’s one every three minutes.

1 in 6 people over the age of 80 have dementia.There are over 40,000 people under 65 with dementia in the UK.

Dementia Charter Mark 

Our Trust aims to provide the best possible care for our patients with dementia - therefore as part of the dementia CQUIN we have adapted the Royal United Hospital Bath Dementia Charter Mark.  

How will I know if I have dementia?

You are unique and will experience dementia in your own way. It may be that your family and friends are more concerned about your symptoms than you are yourself. 

You or your carer/loved ones may notice:

Loss of memory: It is usually your short-term memory that is affected. For example, you may forget what happened earlier in the day, or you may not be able to recall what you have been talking about. You may repeat things or forget the way home from the shops. Your long-term memory usually remains intact.

Mood changes: You may feel withdrawn, sad, frightened, or angry about what is happening to you.

Communication problems: It may be hard to find the right words for things, and you may find yourself having to describe what an item does instead of being able to name it.

Daily living skills: People living with dementia sometimes find it difficult to maintain their daily routine and activities independently. Patience, prompting and support from carers and loved ones can encourage independence and can have a big impact on how capable and confident a person living with dementia feels.

Diagnosis

A diagnosis of dementia affects both the person with the condition and those close to them. An early diagnosis gives you both the best chance to prepare and plan for the future, as well as receive any treatment that may be possible. With treatment and support, many people are able to lead active, fulfilling lives.

How is dementia diagnosed?

It is very important to get proper diagnosis. We need to be sure that the changes you are experiencing are symptoms of dementia rather than another illness with similar symptoms to dementia (for example, depression and delirium).

A diagnosis can help you, your carer and your loved ones to prepare and plan for the future. Once you have a diagnosis, it may also be possible to prescribe you drugs for Alzheimer's disease. Dementia can be diagnosed by your GP or by a specialist doctor. The specialist may be a geriatrician (a doctor who specialises in caring for older people), a neurologist (a doctor who specialises in diseases that affect the nervous system), or a psychiatrist (a doctor who specialises in mental health).

Your doctor may ask you to do a number of tests to check your basic thinking processes and your ability to do daily tasks. They may book more tests for you, such as blood tests, a brain scan or a more in-depth check of your memory, ability to concentrate and thinking skills.

What is mild cognitive impairment?

You may be having problems with your memory, but your doctor may not think the symptoms are severe enough to diagnose you with a type of dementia, particularly if you are still managing well. Some doctors call this condition ‘mild cognitive impairment’ (MCI). Recent research has shown that people with MCI are more likely to develop dementia but having MCI does not always mean that you will go on to develop dementia. Each year, around one to two in every 10 people with MCI go on to develop Alzheimer's.

What causes dementia?

There are several diseases and conditions that cause dementia, including: Alzheimer’s disease. This is the most common cause of dementia. It gradually changes the chemistry and structure of your brain and causes brain cells to die. Problems with short-term memory are usually the first obvious sign. 

Vascular dementia

This is caused by your brain not getting enough blood and oxygen. Without enough oxygen, brain cells die and cause the symptoms of vascular dementia. This can happen after a stroke or because the arteries (blood vessels) supplying oxygen to your brain are damaged. You can experience the symptoms suddenly after a stroke, or over time (after a series of small strokes). 

Dementia with Lewy bodies (DLB) 

This type of dementia gets its name from tiny abnormal structures, called Lewy bodies, which build up inside the nerve cells in the brain. Lewy bodies cause brain tissue to break down and prevent the brain from functioning properly. Symptoms can include confusion and hallucinations (seeing or hearing things that are not really there), as well as finding it hard to plan, reason and solve problems. Your memory may be affected too. This form of dementia shares some characteristics with Parkinson's disease and may mean that you are not able to have certain types of medications. 

Click here to go to the Alzheimer's Society website for more information about types of dementia.

Can dementia be cured?

Most forms of dementia cannot be cured, although medical researchers are working to find causes and develop treatments.Dementia research has until now been desperately underfunded. In 2012/13, the UK spent £73.8 million on dementia research as opposed to £502.8 million on cancer research. The good news is – the government has recently announced that £300 million is to be spent by on research into dementia.

Delaying the onset of dementia by five years would halve the number of deaths from the condition, saving 30,000 lives a year.


Care

Dementia care can be both rewarding and at times challenging.

People with dementia can react to different situations in different ways; sometimes with distress and anxiety and other times with irritation and frustration. Such behaviours are often an attempt to communicate an unmet need. It is important at such time to seek out support.

Over time, the person with dementia will require help to manage at home and may eventually find that their needs are better met in a residential or nursing care setting

It is natural to feel worried about the future, – whether you have dementia or you care for someone with the condition.  Your GP,The NHS, social services and voluntary organisations can all provide advice and support.


How will I be cared for if I need to come into hospital?

Hospital can be confusing and frightening when you have dementia, and it may make you more confused than usual. You might find the ward loud and unfamiliar, and you may not understand why you are there. If you have dementia and need to stay in hospital, it is important that all staff are aware that you have dementia. We ask your carers to give us as much information about you and your condition as they can, so that we can carefully tailor the care that you receive. Your named nurse should explain to other members of staff how your dementia can affect your behaviour and how you communicate. They should also tell staff whether you prefer to be called by your first name, title or by a nickname. The Alzheimer's Society produces a booklet called ‘This is me’ (see 'Support for Patients and Carers' tab) on which can be used to write this information down. When it is filled in, it gives us a snapshot of who you are, with details about your needs, interests, and what you prefer, like and dislike. If you have memory problems and need further memory checks, you might be referred to a memory clinic after you have gone home from hospital.

Willow House is a dedicated 'dementia friendly' unit run by us  - for more information see the 'Willow House' tab. 

'This is me' - a tool for people with dementia receiving professional care

This is me is for people with dementia who are receiving professional care in any setting – at home, in hospital, in respite care or a care home. It was originally developed for people with dementia who were going into hospital.

It is a simple and practical tool that people with dementia can use to tell staff about their needs, preferences, likes, dislikes and interests.

It enables health and social care professionals to see the person as an individual and deliver person-centered care that is tailored specifically to the person's needs. It can therefore help to reduce distress for the person with dementia and their carer. It can also help to prevent issues with communication, or more serious conditions such as malnutrition and dehydration. 

This is me was first developed by the Northumberland Acute Care and Dementia Group and is supported by the Royal College of Nursing.

Download the 'This is me' leaflet.

This form can be completed in print, or by typing into the PDF document and saving it for use.

Carers: looking after yourself

When you are caring for someone with dementia, it can be easy to ignore your own needs and forget that you matter too. If you are caring for someone with dementia, be prepared for the fact that you will need support at some point. You will probably need a lot of different types of help and support, ranging from practical care to give you time off from being a carer, to having someone to talk to about your feelings and concerns. Think about what help you might need, and where you can get it from, before you actually need it. That way, when the time comes, you will know where to turn. Be clear about what support you need, especially when you ask for help in the form of services, and be assertive and persistent. Make it clear that you cannot continue with your caring role unless you receive the support that you need for yourself.

Living Well Handbook

We have have produced ‘the living well handbook’.  The inspiration came from real life experience of a person living with dementia and his carer who felt it was important to have one place to store essential information. If you have been diagnosed with dementia or care for someone with dementia and you would like a copy of the handbook please email Christina.hulse@bhamcommunity.nhs.uk.

If you are interested in being part of the trust dementia forum, which brings professionals together work together to improve quality of the care people with dementia received, please contact Beverley Marriott for more information.

Useful contacts: 

Jackie Rees Hordell
Assistant Director , 
Dementia Services
Birmingham Community Healthcare NHS Foundation Trust
0121 466 6061


Admiral Nurse Service (specialist mental health nurses who work with family carers and people with dementia):

Tel: 0121 301 5440.


Age UK:

Tel: 0800 169 6565,

Web: www.ageuk.org.uk


Alzheimer’s Society:

Tel: 0121 706 4052

Web: www.alzheimers.org.uk


Birmingham Carers Centre:

Tel: 0121 271 0808

 

Carer Support Team (Birmingham Community Healthcare):

Tel: 0121 466 4314

 

Carers Trust:

Tel: 0844 800 4361

Web: www.carers.org/

 

Carers UK Advice Line:

Tel: 0808 808 7777,

Email: advice@carersuk.org

Web: www.carersuk.org/

 

Citizens Advice Bureau (city centre):

Tel: 0121 248 4950

 

Dementia Friends:

Web: www.dementiafriends.org.uk

 

Dementia web:

Web: www.dementiaweb.org.uk


Dementia Action Alliance 

Dementia Action Alliance

NHS Choices:

Web: www.nhs.uk/conditions/dementia-guide/pages/about-dementia.aspx


Rethink:

Tel: 0121 525 5722


Social Care Institute for Excellence:

Web:www.scie.org.uk

 

User Voice:

Tel: 0121 678 4457

In 2014, the Trust opened its first dementia-friendly unit - Willow House. Admission to Willow House is based on intermediate care needs with referrals from the Community Medical Assessment Unit, consultants at University Hospitals Birmingham (UHB) via Single Point of Access, Community (GPs, Paramedics, Community teams), following clinical triage at University Hospitals Birmingham or transfers internally from other wards/units. 

The unit allows this client group to be in a safer environment with a higher ratio of staff in a smaller (18 beds) unit than an existing ward (27 beds). The staff at Willow House are very passionate about the specialist care they provide, and welcome new ideas and feedback from patients, their families and carers.

[ Zoom ]
Clients in Willow House serve themselves breakfast
[ Zoom ]
Clients at Willow House help to maintain the garden as part of therapy
[ Zoom ]
Willow House exterior, garden

How will I know if I have dementia?

You are unique and will experience dementia in your own way. It may be that your family and friends are more concerned about your symptoms than you are yourself. 

You or your carer/loved ones may notice:

Loss of memory: It is usually your short-term memory that is affected. For example, you may forget what happened earlier in the day, or you may not be able to recall what you have been talking about. You may repeat things or forget the way home from the shops. Your long-term memory usually remains intact.

Mood changes: You may feel withdrawn, sad, frightened, or angry about what is happening to you.

Communication problems: It may be hard to find the right words for things, and you may find yourself having to describe what an item does instead of being able to name it.

Daily living skills: People living with dementia sometimes find it difficult to maintain their daily routine and activities independently. Patience, prompting and support from carers and loved ones can encourage independence and can have a big impact on how capable and confident a person living with dementia feels.

Diagnosis

A diagnosis of dementia affects both the person with the condition and those close to them. An early diagnosis gives you both the best chance to prepare and plan for the future, as well as receive any treatment that may be possible. With treatment and support, many people are able to lead active, fulfilling lives.

How is dementia diagnosed?

It is very important to get proper diagnosis. We need to be sure that the changes you are experiencing are symptoms of dementia rather than another illness with similar symptoms to dementia (for example, depression and delirium).

A diagnosis can help you, your carer and your loved ones to prepare and plan for the future. Once you have a diagnosis, it may also be possible to prescribe you drugs for Alzheimer's disease. Dementia can be diagnosed by your GP or by a specialist doctor. The specialist may be a geriatrician (a doctor who specialises in caring for older people), a neurologist (a doctor who specialises in diseases that affect the nervous system), or a psychiatrist (a doctor who specialises in mental health).

Your doctor may ask you to do a number of tests to check your basic thinking processes and your ability to do daily tasks. They may book more tests for you, such as blood tests, a brain scan or a more in-depth check of your memory, ability to concentrate and thinking skills.

What is mild cognitive impairment?

You may be having problems with your memory, but your doctor may not think the symptoms are severe enough to diagnose you with a type of dementia, particularly if you are still managing well. Some doctors call this condition ‘mild cognitive impairment’ (MCI). Recent research has shown that people with MCI are more likely to develop dementia but having MCI does not always mean that you will go on to develop dementia. Each year, around one to two in every 10 people with MCI go on to develop Alzheimer's.

What causes dementia?

There are several diseases and conditions that cause dementia, including: Alzheimer’s disease. This is the most common cause of dementia. It gradually changes the chemistry and structure of your brain and causes brain cells to die. Problems with short-term memory are usually the first obvious sign. 

Vascular dementia

This is caused by your brain not getting enough blood and oxygen. Without enough oxygen, brain cells die and cause the symptoms of vascular dementia. This can happen after a stroke or because the arteries (blood vessels) supplying oxygen to your brain are damaged. You can experience the symptoms suddenly after a stroke, or over time (after a series of small strokes). 

Dementia with Lewy bodies (DLB) 

This type of dementia gets its name from tiny abnormal structures, called Lewy bodies, which build up inside the nerve cells in the brain. Lewy bodies cause brain tissue to break down and prevent the brain from functioning properly. Symptoms can include confusion and hallucinations (seeing or hearing things that are not really there), as well as finding it hard to plan, reason and solve problems. Your memory may be affected too. This form of dementia shares some characteristics with Parkinson's disease and may mean that you are not able to have certain types of medications. 

Can dementia be cured?

Most forms of dementia cannot be cured, although medical researchers are working to find causes and develop treatments.Dementia research has until now been desperately underfunded. In 2012/13, the UK spent £73.8 million on dementia research as opposed to £502.8 million on cancer research. The good news is – the government has recently announced that £300 million is to be spent by on research into dementia.

Delaying the onset of dementia by five years would halve the number of deaths from the condition, saving 30,000 lives a year.


Care

Dementia care can be both rewarding and at times challenging.

People with dementia can react to different situations in different ways; sometimes with distress and anxiety and other times with irritation and frustration. Such behaviours are often an attempt to communicate an unmet need. It is important at such time to seek out support.

Over time, the person with dementia will require help to manage at home and may eventually find that their needs are better met in a residential or nursing care setting

 

It is natural to feel worried about the future, – whether you have dementia or you care for someone with the condition.  Your GP,The NHS, social services and voluntary organisations can all provide advice and support.


How will I be cared for if I need to come into hospital?

Hospital can be confusing and frightening when you have dementia, and it may make you more confused than usual. You might find the ward loud and unfamiliar, and you may not understand why you are there. If you have dementia and need to stay in hospital, it is important that all staff are aware that you have dementia. We ask your carers to give us as much information about you and your condition as they can, so that we can carefully tailor the care that you receive. Your named nurse should explain to other members of staff how your dementia can affect your behaviour and how you communicate. They should also tell staff whether you prefer to be called by your first name, title or by a nickname. The Alzheimer's Society produces a booklet called ‘This is me’ (see 'Support for Patients and Carers' tab) on which can be used to write this information down. When it is filled in, it gives us a snapshot of who you are, with details about your needs, interests, and what you prefer, like and dislike. If you have memory problems and need further memory checks, you might be referred to a memory clinic after you have gone home from hospital.

Willow House is a dedicated 'dementia friendly' unit run by BCHC  - for more information see the 'Willow House' tab. 

'This is me' - a tool for people with dementia receiving professional care

This is me is for people with dementia who are receiving professional care in any setting – at home, in hospital, in respite care or a care home. It was originally developed for people with dementia who were going into hospital.

It is a simple and practical tool that people with dementia can use to tell staff about their needs, preferences, likes, dislikes and interests.

It enables health and social care professionals to see the person as an individual and deliver person-centered care that is tailored specifically to the person's needs. It can therefore help to reduce distress for the person with dementia and their carer. It can also help to prevent issues with communication, or more serious conditions such as malnutrition and dehydration. 

This is me was first developed by the Northumberland Acute Care and Dementia Group and is supported by the Royal College of Nursing.

Download the 'This is me' leaflet.

This form can be completed in print, or by typing into the PDF document and saving it for use.

Carers: looking after yourself

When you are caring for someone with dementia, it can be easy to ignore your own needs and forget that you matter too. If you are caring for someone with dementia, be prepared for the fact that you will need support at some point. You will probably need a lot of different types of help and support, ranging from practical care to give you time off from being a carer, to having someone to talk to about your feelings and concerns. Think about what help you might need, and where you can get it from, before you actually need it. That way, when the time comes, you will know where to turn. Be clear about what support you need, especially when you ask for help in the form of services, and be assertive and persistent. Make it clear that you cannot continue with your caring role unless you receive the support that you need for yourself.

Living Well Handbook

BCHC has produced ‘the living well handbook’.  The inspiration came from real life experience of a person living with dementia and his carer who felt it was important to have one place to store essential information. If you have been diagnosed with dementia or care for someone with dementia and you would like a copy of the handbook please email Christina.hulse@bhamcommunity.nhs.uk.

Useful contacts: 

Admiral Nurse Service (specialist mental health nurses who work with family carers and people with dementia):

Tel: 0121 301 5440.


Age UK:

Tel: 0800 169 6565,

Web: www.ageuk.org.uk


Alzheimer’s Society:

Tel: 0121 706 4052

Web: www.alzheimers.org.uk


Birmingham Carers Centre:

Tel: 0121 271 0808

 

Carer Support Team (Birmingham Community Healthcare): 

Tel: 0121 466 4314

 

Carers Trust:

Tel: 0844 800 4361

Web: www.carers.org/

 

Carers UK Advice Line:

Tel: 0808 808 7777,

Email: advice@carersuk.org

Web: www.carersuk.org/

 

Citizens Advice Bureau (city centre):

Tel: 0121 248 4950

 

Dementia Friends:

Web: www.dementiafriends.org.uk

 

Dementia web:

Web: www.dementiaweb.org.uk

Dementia Action Alliance 

Dementia Action Alliance 

NHS Choices:

Web: www.nhs.uk/conditions/dementia-guide/pages/about-dementia.aspx


Rethink:

Tel: 0121 525 5722


Social Care Institute for Excellence:

Web:www.scie.org.uk

 

User Voice: 

Tel: 0121 678 4457

In 2014, Birmingham Community Healthcare opened its first dementia-friendly unit - Willow House. Admission to Willow House is based on intermediate care needs with referrals from the Community Medical Assessment Unit, consultants at University Hospitals Birmingham (UHB) via Single Point of Access, Community (GPs, Paramedics, Community teams), following clinical triage at University Hospitals Birmingham or transfers internally from other BCHC wards/units. 

The unit allows this client group to be in a safer environment with a higher ratio of staff in a smaller (18 beds) unit than an existing ward (27 beds). The staff at Willow House are very passionate about the specialist care they provide, and welcome new ideas and feedback from patients, their families and carers.

Clients in Willow House serve themselves breakfast
Clients at Willow House help to maintain the garden as part of therapy
Willow House exterior, garden