As many of you know this month is Alzheimer’s Awareness Month. So, somewhat counter intuitively, I have decided to have a look at other form of dementia. In this case I’d like to focus on a condition called Dementia with Lewy Bodies.
Dementia (and this form of dementia in particular) has been on my mind for the last few weeks. There are a couple of reasons for this. Firstly as I get older my family members age as well. Secondly because the man after whom this medical condition is named (albeit some decades apart) went to the same medical school as my cousin.
So I wanted to look at Dementia with Lewy bodies a bit more closely.
As you know Alzheimer’s disease is not the only type of dementia. In fact Dementia with Lewy bodies may be responsible for around 10% of dementia cases. Though it should be noted that typically in only 4% of cases are actually diagnosed as Dementia with Lewy bodies (DLB) by healthcare professionals. So there is more than a bit of uncertainty about a diagnosis.
Okay so let’s start from the beginning. What exactly are Lewy bodies?
Lewy bodies are “tiny deposits of protein in nerve cells” – currently scientists are not clear as to why they appear. Though, in fact, they are present in both DLB and Parkinson’s disease. In fact DLB shares symptoms with both Alzheimer’s disease and Parkinson’s disease. And also with some other progressive neurological conditions as well. As of today scientists are still unclear as to how Lewy bodies operate. Thought it does seems that the Lewy bodies interfere with chemical signals between nerve cells.
So what are the symptoms of Dementia with Lewy bodies?
As with Alzheimer’s disease people with DLB suffer from memory and judgement issues but they also have issues with concentration and visual perception. By visual perception we mean how a person sees objects in space and general recognition of those objects.
As with Parkinson’s they may suffer from tremors, slowed-down movements and stiff limbs.
In some cases the patient may suffer from hallucinations. Fatigue and disrupted sleep is also very common for person with Dementia with Lewy Bodies. And in a few cases falling and fainting will occur.
Many patients suffer from swings in concentration. This might mean a swift change from general alertness to simply just starring into space.
While Dementia with Lewy Bodies’ symptoms can be treated current there is no cure for the condition. Therapies are generally used for particular symptoms so treatment regimens will vary for patient to patient. For example Acetylcholinesterase inhibitors can be used for cognitive dysfunction, hallucinations and drowsiness.
As with other neurological conditions physiotherapy can be used alongside occupational therapy. And in many cases speech and language therapy as well.
Patients may also be exposed to other therapies. Cognitive stimulation which involves taking part in activities and exercises designed to improve memory, problem-solving skills and language ability. Reality orientation therapy reduces feelings of mental disorientation, memory loss and confusion, while improving self-esteem.
It should be mentioned that if you or a loved one has been diagnosed with any kind of dementia it is vital to get legal advice to make sure your or their affairs are in order.
If you have seen one of our discussion blog post at Patient Talk before you will know that the most important part is to start a discussion among our readers and those in the Dementia with Lewy bodies’ community. So we were hoping some of you may be able to help with the following questions which will help to educate others about the condition. We are keen to hear from friends, family and caregivers as well as people with Dementia with Lewy bodies.
So here goes:-
What were the earliest signs and symptoms of Dementia with Lewy bodies?
How did Dementia with Lewy bodies’ progress?
What treatments were offered to you or a loved one? How effective were those treatments for Dementia with Lewy bodies?
What advice would you give to a person
And their families who has just been diagnosed with Dementia with Lewy bodies?
Thanks very much in advance. Please note that these are just guide lines. Anything you have to say will be of massive interest to our readers.
Finally if you want or need more information why not have a look the web site of the Dementia with Lewy bodies Society in the UK and its fraternal organisation in America, Canada and Australia.
Whether your diagnosis came as a shock, or confirmed what you’d suspected for some time, it’s important to plan ahead while you’re still able to make clear decisions for yourself.
If you’ve just been diagnosed with dementia, you may be feeling numb, scared and unable to take everything in. Give yourself a little time to adjust. It might help to talk it through with family and friends.
Once the initial feelings have passed, it’s time to move on and create an action plan for the future. Dementia is a progressive illness, so the sooner you take care of legal, financial and healthcare matters, the better. These are the key things to think about:
Find out what’s available locally, so you’re prepared and able to call on this support as and when you need it. Services arranged by local authorities vary between areas, but may include home care services, equipment and adaptations for your home. Some services, such as community nursing, are arranged through the NHS. Ask your hospital consultant for details.
It’s a good idea to make a will, if you haven’t already. This ensures that when you die, your money and possessions go to people of your choosing. A person with dementia can still make or change a will, provided you can show that you understand what you are doing and what the effects of it will be. Your solicitor will decide if this is the case.
Make sure that all your important papers can be easily found. These might include bank and building society statements, mortgage or rent documents, insurance policies, your will, tax and pension details, bills and guarantees.
Consider setting up direct debits or standing orders for your regular bills. This will mean they are paid automatically from your bank account each month.
Check that you are claiming all the benefits you’re entitled to. In particular, check:
whether you are eligible for Personal Independence Payment (which replaced Disability Living Allowance in early 2013) or Attendance Allowance
whether your carer (if you have one) is eligible for Carer’s Allowance
Lasting power of attorney
You can appoint one or more people as “attorneys” to manage your affairs, including your finances, property and medical treatment, should it become necessary. You can choose anybody you trust to be your attorney, usually a close friend or family member, but they must be over 18.
You may wish to make an advance care plan, so you can have a say in your future medical care. It enables you to refuse, in advance, a specific medical treatment or procedure, should you become unable to decide for yourself in the future.
As with other long-term conditions, it’s important to look after yourself when you have dementia, by stopping smoking, eating healthily and taking regular exercise. Ask your GP if you would benefit from flu vaccination and pneumonia vaccination.
Memory books can be a helpful way of stimulating your memory and reconnecting you with your loved ones in the future. Essentially, it’s a “This is Your Life” compilation of photographs, notes and keepsakes from your childhood through to the present day. It can be either a physical book or a digital system, like a photo book.
Dementia books on prescription
Reading Well Books on Prescription for dementia offer support for people diagnosed with dementia, plus their relatives and carers. GPs and other health professionals can recommend titles from a list of 25 books on dementia. The books are available for anyone to borrow for free from their local library.
Books on Prescription for dementia are also available to people living without a formal diagnosis, who may be worrying about symptoms.
For millions of older Americans, moving into a nursing home is a common step as many start to require more assistance and specialized care. According to the Centers for Disease Control and Prevention (CDC), over 1.4 million residents live in a nursing home facility and are likely to make it their permanent residence for the rest of their lives. Older individuals move to nursing homes for a number of reasons from a short visit after a surgery to a permanent stay after suffering from a memory loss issue like Alzheimer’s.
Today, there are a great number of nursing home facilities that are specialized in memory care or have a specific wing or unit for elders with dementia. If you are a caregiver or relative to an elderly loved one, here are some signs of dementia and some steps to consider when moving him or her into a nursing home facility:
What is Dementia?
Many people think that dementia is a specific disease affecting the brain, but instead, it is a term that describes the wide range of symptoms associated with memory loss and other cognitive skills severe enough to interfere with an individual’s ability to perform simple, daily tasks. There are two common types of dementia, Alzheimer’s disease and vascular dementia. Alzheimer’s accounts for about 80% of dementia cases, while vascular dementia occurs after a stroke. Alzheimer’s disease occurs when there are high levels of a certain protein inside and outside of brain cells, making it hard for the cells to stay healthy and communicate properly and the hippocampus (the learning and memory center of the brain) becomes damaged, leading to memory loss.
Many people assume that dementia is a natural part of aging and is often mistakenly called “senility”, but dementia occurs when brain cells have been damaged due to depression, medication side effects, alcohol abuse, thyroid issues, and even vitamin deficiencies. While damage is often permanent, some damage can be stopped or prevented from getting worse when certain condition (listed above) are treated.
The Warning Signs of Dementia
Although dementia can affect each individual differently, depending on the type of dementia one has, there are common warning signs that can alert a caregiver or a relative that an elderly individual may have dementia. Some signs may include, but are not limited to:
Memory Loss: Forgetting newly learned information, asking for the same information repeatedly, forgetting important dates or information.
Struggle with Planning or Solving: An individual may be showing a early sign of dementia if he or she struggles with tasks that used to be easy such as simple math problems, keeping track of bills and important paperwork, and following a familiar recipe.
Unaware of Time or Place: Everyone may lose track of time every now and again, but when someone doesn’t know how he or she got to where he or she is or is confused about a time or place, he or she may have dementia.
Change in Mood or Personality: Damage to brain cells can make someone seem like he is someone else. He or she may not enjoy things like he or she used to or doesn’t trust or feel comfortable around friends and family.
Time to Move
When someone starts to show signs of dementia, many caregivers and loved ones try to “cover up” any evidence. Unfortunately, over time, particularly as the symptoms get worse, it becomes harder to help out and manage the symptoms like memory loss, changes in moods, and struggling to do daily tasks. As symptoms worsen, the health and overall safety of the individual with dementia is at risk.
According to Salvi, Schostok, & Pritchard, PC, early planning and research can make for an easier transition when it’s time to move a loved one into a nursing home. Before an incident occurs, such as getting lost or causing harm to oneself, caregivers and loved ones should begin to plan a move into a nursing home facility where the individual can receive the specialized and safe care that he or she needs.