Why Research Is So Important For Dementia Care (Updated 22.5.13)

This week is Dementia Awareness Week (TM). This is a timely point to review why Dementia research is so important. In the Department of Health video above Professor Alistair Burns interviews Professor Martin Rossor, director at DeNDRon (Dementias and Neurodegenerative Diseases Research Network) about Dementia Research.

Index: There are indices for the TAWOP site here and here Twitter: You can follow ‘The Amazing World of Psychiatry’ Twitter by clicking on this link. Podcast: You can listen to this post on Odiogo by clicking on this link (there may be a small delay between publishing of the blog article and the availability of the podcast). It is available for a limited period. TAWOP Channel: You can follow the TAWOP Channel on YouTube by clicking on this link. Responses: If you have any comments, you can leave them below or alternatively e-mail justinmarley17@yahoo.co.uk. Disclaimer: The comments made here represent the opinions of the author and do not represent the profession or any body/organisation. The comments made here are not meant as a source of medical advice and those seeking medical advice are advised to consult with their own doctor. The author is not responsible for the contents of any external sites that are linked to in this blog.

Professor Bruce Miller Discusses Frontotemporal Dementia

Neurologist Professor Bruce Miller is director of the University of California San Francisco Department of Neurology Memory and Aging Centre. There are a series of educational videos about Dementia on the USCSF Memory and Aging YouTube Channel. In the video above, Professor Miller talks about how emotions can be affected in Frontotemporal Dementia with reference to lateralisation of the disease process in the brain.

Index: There are indices for the TAWOP site here and here Twitter: You can follow ‘The Amazing World of Psychiatry’ Twitter by clicking on this link. Podcast: You can listen to this post on Odiogo by clicking on this link (there may be a small delay between publishing of the blog article and the availability of the podcast). It is available for a limited period. TAWOP Channel: You can follow the TAWOP Channel on YouTube by clicking on this link. Responses: If you have any comments, you can leave them below or alternatively e-mail justinmarley17@yahoo.co.uk. Disclaimer: The comments made here represent the opinions of the author and do not represent the profession or any body/organisation. The comments made here are not meant as a source of medical advice and those seeking medical advice are advised to consult with their own doctor. The author is not responsible for the contents of any external sites that are linked to in this blog.

Dementia Awareness Week (TM) 2013 May 19-25th (Updated 20th May)

Dementia Awareness Week (TM)

Dementia Awareness Week (TM) starts on May 19th and ends on May 25th 2013. This is the annual flagship event of the Alzheimer’s Society.  This is an opportunity for organisations and individuals to get involved in raising awareness of Dementia. The main page for the campaign at the Alzheimer’s Society website is here. Actress Ruth Jones launched the campaign.

Actress Ruth Jones Talks About Dementia Awareness Week

What is Dementia?

Dementia is a degenerative disease which affects the Nervous System. Dementia can affect the Cerebral Cortex – the area that is popularly thought of as part of the Brain  and the less well known Subcortical areas – the areas beneath the Cerebral Cortex. Some forms of Dementia can also directly affect the Peripheral Nervous System. Dementia is a progressive condition. This means that it can get worse with time. Dementia is also defined as irreversible meaning that the underlying changes in the Nervous System do not get better.  Although these underlying changes might not get better, a person’s general functioning may improve with certain types of input or else a person can be supported with different services that can compensate for functional difficulties. People with Dementia can still enjoy a good quality of life even though they might be experiencing these difficulties.

Although the word Dementia is a single word it actually covers a large number of conditions. The most common forms of Dementia that affect the Cortex are Alzheimer’s Disease, Frontotemporal Dementia, Vascular Dementia and Lewy Body Dementia. The most common forms of Subcortical Dementia are Subcortical Vascular Dementia, Parkinson’s Disease, and Huntington’s Disease. Whilst Multiple Sclerosis is not commonly thought of as a form of Dementia it can nevertheless slow down the speed of thinking and affect the ability to organise information (executive functioning). There are different forms of Multiple Sclerosis, some of which do improve. There are also a large number of other rare conditions that can lead to Dementia such as Wilson’s Disease, AIDS-related Dementia and Creutzfeld Jacob Disease. Alcohol related Dementia is becoming increasingly recognised.

Alzheimer’s Society Video on Dementia

Alzheimer’s Society Video on Alzheimer’s Disease

Alzheimer’s Society Video on Frontotemporal Dementia

Alzheimer’s Society Video on Vascular Dementia

Alzheimer’s Society Video on Lewy Body Dementia

Understanding what type of Dementia someone has is important because it can help people to understand the strengths and weaknesses a person might have as well as how the disease might progress as well as what interventions can help them best. Even so there is a lot of individual variation. For instance if someone has Vascular Dementia following a Stroke or several Strokes there are many different parts of the Brain that can be affected. Although some important functions are localised in certain Brain regions, the Brain is a complex, plastic organ. This means that the Brain has multiple areas for some functions and there is therefore a lot of redundancy built in. Therefore Vascular Dementia following a Stroke in one region of the Brain may produce a subtly different picture to that following a Stroke in another region of the Brain (although Strokes do not necessarily cause Vascular Dementia).

What is Alzheimer’s Disease?

Alzheimer’s Disease is one of the most common forms of Dementia. When people develop Alzheimer’s Disease under the age of 65 we call it Early Onset Alzheimer’s Disease. When they develop Alzheimer’s Disease over the age of 65 we call it Late Onset Alzheimer’s Disease. There are a number of genes that have been associated with Early Onset Alzheimer’s Disease. When a person has Alzheimer’s Disease they can progress quickly or slowly and there is still a lot of research needed to understand why this is so. Alzheimer’s Disease has a number of associations. In the brain’s of people with Alzheimer’s Disease, researchers have found structures called Amyloid plaques and Neurofibrillary Tangles. These structures are found both inside and outside of the nerve cells and to properly understand this researchers use microscopes.

Explanation of Neurofibrillary Tangles

Explanation of Senile Plaques

Alzheimer’s Disease is also associated with a deficit in a chemical called Acetylcholine and this is the basis for using a class of drugs known as the Acetylcholinesterase Inhibitors. Another class of drugs acts on the NMDA receptors in the Brain which helps with a memory function known as Long Term Potentiation or LTP for short.

Biological Markers and Dementia

Researchers are looking for biological markers that can predict Dementia. These include markers in the blood, markers in the Cerebrospinal Fluid (this means extracting the fluid bathing the brain using a lumbar puncture), genetic analysis (using methods such as Genome Wide Association Studies (GWAS)) and neuroimaging findings using Magnetic Resonance Imaging (MRI), Diffuse Tensor Imaging MRI (DTI), Positron Emission Tomography (PET), Electroencephalography (EEG), Magnetoencephalography (MEG) and Single Positron Emission Computed Tomography (SPECT).

Electroencephalography Explained

MRI Explained

A Brief Look at Diffuse Tensor Imaging

An Explanation of Positron Emission Tomography

What is Mild Cognitive Impairment?

There is also a condition known as Mild Cognitive Impairment. This is not quite the same as Dementia but even so, people are struggling with one or more areas of their cognition. They might be having difficulties planning or organising material or remembering appointments. The diagnosis is made with paper and pen testing as well as other investigations and a history. The importance of Mild Cognitive Impairment is that even though it isn’t Dementia, one day people might develop Dementia. Having this diagnosis means people can link in with services and check for signs of Dementia.

The Importance of the Multidisciplinary Team in Dementia

As well as biological approaches to Dementia in terms of medical treatment, important approaches include psychological and social approaches. With psychological approaches, specialists will look at cognitive-behavioural approaches for people with Dementia who might be disturbed and agitated. This can happen in people with advanced Dementia after many years of having Dementia (although many people do not get disturbed in this way). These approaches can help people with Dementia to express themselves in different ways and also helped loved ones and carers to better understand what they might be experiencing. Clinical Psychologists are also able to carry out detailed assessments of cognition to get a better understanding of strengths and difficulties which can be used to improve functioning and inform management.

There are many types of professionals that bring their skills to help in different ways. Occupational therapists can see how people with Dementia function in their homes and using this knowledge can help families to support people at home when this might not have been possible otherwise.  Nurses can visit people at home and get an overview of their function and bring a number of skills to improve quality of life and identify important needs that otherwise might have been missed. Nurses also manage people with Dementia when they are admitted to hospital and will use a broad range of skills to deliver care in the inpatient environment. Social workers can bring a broad set of skills to support people with Dementia and will have a detailed knowledge of how to bring external care into the home to help people overcome their functional difficulties and manage or else to find suitable places that can support people with Dementia and give them a good quality of life.

Physiotherapists can help people with Dementia to minimise the risk of falls and help with therapeutic physical exercise as well as bringing a number of other skills to help a person with Dementia and their family build a therapeutic routine. Behind the scenes the unsung heroes are the managers, who manage these activities and the administrators coordinating and communicating these activities to ensure that they run smoothly. The General Practitioners/Primary Care Physicians are the custodians of the community who identify people who may have or be at risk of Dementia and ensure that they receive a diagnosis of Dementia and appropriate services.

There also a number of important voluntary sector services that support people with Dementia. The Alzheimer’s Society is one of the main voluntary sector organisations in the UK for people with Dementia.

Carers for People With Dementia

People who care for people with Dementia are often loved ones – spouses or other family members. Being in a relationship can be different from taking on a caring role. Sometimes these can work well together and the caring role doesn’t make too much of an impact. At other times the caring role can involve a lot of commitment with interrupted sleep and a need to remain in the house to look after the person with Dementia who is unable to be left alone at home. Fortunately services can help in these circumstances and there are options such as respite care that can work really well or carers that can come into the home to support carers who can take time out to rest and return to the caring role.

Dementia Awareness Week Events

There are a number of events during Dementia Awareness Week (TM). An overview is given at the Alzheimer’s Society website.

At the Guardian there is a piece by Kirsty Day about her father, a former journalist who later developed Dementia (there is also another brief piece here). The Express has a feature article by Pippa Kelly which includes a look at the work of the Admiral nurses. The Telegraph has an article about the Montessori Method. The Nursing Times discusses creative approaches in Dementia care. The Independent has a look at factors that might improve quality of life for people with Dementia.

• The Advertiser and Bicester Review looks at local events including a singing event.
• The Bromley Times looks at open days in the area.
• The Chronicle looks at personal accounts of having a parent with Dementia
• The Clacton Gazette looks at local Dementia Workshops
• The Crawley and Horley Advertiser looks at a campaign for Crawley to be recognised as a Dementia friendly town
• The Croydon Guardian looks at a local memorabilia donating initiative
• The Northern Echo looks at local fundraising events
• The Dorset Echo looks at local events.
• The EDP 24 looks at local events including a tour by a local MP.
• The Haringey Advertiser looks at local events.
• The Hartlepool Mail has a detailed breakdown of local events.
• The Lancashire Evening Post looks at local fund-raising events.
• The Lynn News looks at events taking place in Fakenham and Hunstanton.
• The Portsmouth News features an article by Luisa Castle.
• The Shields Gazette looks at events in South Shields including a Dementia Café (also featured at the Austrian Tribune).
• Sky Tyne and Wear looks at how one man came to terms with his mother’s illness.
• The Southern Daily Echo looks at how Southampton is running a unique workshop for families of people with Dementia
• The St Helens Star looks at local events including a drop-in service.
• This is South Wales looks at a series of local events.
• This is Total Essex looks at  a Brentwood charity event.
• The Ulster Star looks at Dementia in pets.
• The Warrington Guardian features a look at the Mayor opening a local event.
• The Westmoreland Gazette looks at events taking place throughout Morecambe Bay.
• The Wiltshire Gazette and Herald looks at the local Dementia Adviser Service
• Your Thurrock looks at local events including a screening of the film ‘Darkness in the Afternoon’.

Index: There are indices for the TAWOP site here and here Twitter: You can follow ‘The Amazing World of Psychiatry’ Twitter by clicking on this link. Podcast: You can listen to this post on Odiogo by clicking on this link (there may be a small delay between publishing of the blog article and the availability of the podcast). It is available for a limited period. TAWOP Channel: You can follow the TAWOP Channel on YouTube by clicking on this link. Responses: If you have any comments, you can leave them below or alternatively e-mail justinmarley17@yahoo.co.uk. Disclaimer: The comments made here represent the opinions of the author and do not represent the profession or any body/organisation. The comments made here are not meant as a source of medical advice and those seeking medical advice are advised to consult with their own doctor. The author is not responsible for the contents of any external sites that are linked to in this blog.

*Conflict of Interest – I am an Older Adult Psychiatrist and this will influence my perspective.