Alzheimer’s is fast becoming the leading cause of death in the over-65 age category and researchers have found themselves in a race against time to find out how to stop it.
These are the 7 stages of this deadly disease:
This is purely physiological; in the very early stages of Alzheimer’s there is little to no noticeable cognitive impairment. However, inside the brain tiny clusters of tau protein are beginning to build up in the amygdala area of the brain.
There is still no obvious change in behaviour or memory impairment. Some mild memory loss may be taking place, but this is usually associated with general fatigue or common age-related impairments.
In some people early-stage Alzheimer’s can be diagnosed. It is at this stage that symptoms may begin to be detected by family and friends as a person struggles to find certain words or names and frequently loses or misplaces objects.
By now, a person is unable to remember a recent event which also extends to the loss of memory of the person’s own family history. They will also be unable to plan an event or effectively run a household by remembering a shopping list or to pay the bills.
There are significant gaps in memory at this stage, and assistance is required for daily tasks and activities. An individual could forget simple information such as their address and telephone number, what high school they attended or what day of the week or month it is.
Memory loss is severe, but they may still retain some deeply etched memories. They may forget names of their spouse and children although they still recall familiar faces. Sundowning and wandering may become a problem.
Severe cognitive decline sets in at the last stage. An individual will lose their ability to respond to their environment, smile, speak or control their movements. They will need help with all daily tasks and will not be able to eat by themselves or sit without support. Eventually the individual will have difficulty swallowing and will possibly need to be fed intravenously.
Caring for someone with Parkinson’s is not an easy job, and is physically and emotionally taxing on any carer. However, if a carer takes the time to understand both the personality of the person they are caring for and does as much research on the disease as possible, the experience can be rewarding for both the carer and their patient.
Here are four rules to follow:
- Only focus on the disease when caring requires it. In other words when you are not helping someone to bath, eat or take their medication then don’t talk about it. The disease is real and you are both aware of it. Make sure that as much time is used to focus on what the person can still do and what they want to do, instead of what they can’t. Don’t let Parkinson’s define who either of you are.
- Remember that everything you are doing is for someone else. Effectively caring for someone with Parkinson’s is a selfless act that can never be repaid. Wake up each morning and say to yourself “this person cannot survive without me, and I have my health in order to help them.” Diseases like Alzheimer’s will not go away, so wishing it would is only a waste of time and a source of emotional pain.
- Join a support group or make friends with other carers. Sharing a burden is one of the best ways to find new ideas, express your fears and share in your triumphs. These range of emotions are proven to psychologically cleanse your mind of negativity associated with loneliness and a sense that you are alone with your troubles. You meet other people with the same difficulties and it’s a great way to understand and be understood.
- Allow the patient some level of control. If you try to get them to do too much you will only end up causing frustration and disappointment. Be guided by what is best for the patient, and that is for them to do things for themselves for as much and as long as possible.
In our rapidly ageing populations, a small glimmer of hope comes from those who instead of focussing on anti-ageing devices, are creating ways to deal with the effects of getting old instead. One such individual, Archibald Godts, a Design Academy Student from Eidhoven, studied the over-65 demographics of Belgium and the Netherlands and their need for frail-care. His findings prompted him to create Man’s Best Friend.
Our canine friends have been successfully trained to help humans in a number of different ways – from professional service dogs and sniffer dogs to those helping humans with disabilities. Godts’ final year project at the Academy looked into the possibility of dogs being used as a helpful companion to the elderly, with the possibility of assisting them in a variety of ways.
Already, dogs are helping with mobility but Godts also explores the possibility of using them to assist with carrying items with four different products, the chariot, the pillbox and the messenger bag and treasury:
- The chariot allows a dog to pull a wheelchair, much like a horse would pull a cart.
- The messenger bag sits over the sides of the dog with enough space to carry small items of shopping.
- The pillbox and treasury are both small containers attached to the dogs collar that carry medication and cell phone respectively.
“In the age where taking pills is recurrent, but forgetting as recurrent, where carrying the groceries becomes a major burden, or being mobile is absolutely problematic,” says Godts, “the symbioses between dog and human shows potential for the purpose.”
Godts’ research involved an extensive look at various aspects of the relationship between human and canine, combining both anatomical properties and intelligence. Man’s Best Friend items could also help carers who need the extra pair of hands, or paws, to help.
Scientists have found evidence that using mindfulness meditation produces better pain-relieving practice than taking placebos. This form of meditation is an old Buddhist technique that practices the art of being aware from one moment to the next, of one’s individual conscious experience from a first-person perception.
Placebo’s are fake medication often used to prove or disprove that someone’s pain has no root physiological cause, but rather, is a side effect of negative emotion translated by the mind into physical pain. In a research environment, these placebos are used to prove the efficacy of pharmaceutical drugs.
The group of scientists from Wake Forest Baptist Medical Centre randomly assigned 75 pain-free participants to one of four groups that used different pain-relief methods - mindfulness meditation, placebo meditation, placebo analgesic cream or pharmaceuticals. A thermal probe heated to 49 degrees Celsius was used to induce pain. Scientists then measured pain rating and used brain imaging to assess physical and emotional pain.
The study, established that mindfulness meditation uses different patterns of activity than those produced by placebo to reduce pain.
The research, published in the Journal of Neuroscience, showed that the mindfulness meditation group of participants reported greater pain relief than the placebo group with pain reduced by 27% and emotionally by 44 percent. The pain in the placebo cream group, appeared to be reduced by 11 percent and its emotional impact by 13%.
"This study is the first to show that mindfulness meditation is mechanistically distinct and produces pain relief above and beyond the analgesic effects seen with either placebo cream or sham meditation," said Fadel Zeidan, Ph.D., assistant professor of neurobiology and anatomy at Wake Forest Baptist and lead investigator of the study.
Lewy Body Dementia (LBD) is a neurological condition with similar symptoms to both Alzheimer’s and Parkinson’s. It is often misdiagnosed because of such close similarities to these other two diseases. Up to 80% of Alzheimer’s diagnoses are in fact LBD. Actor Robin Williams who committed suicide in August 2014 was initially diagnosed with Parkinson’s, but a later autopsy revealed he had the early signs of LBD.
Lewy bodies are abnormal deposits of proteins called alpha-synuclein that accumulate in nerve cells. Over time, these proteins cause disruptive cognitive function and produce a crossover of Alzheimer’s and Parkinson’s symptoms such as tremors, as well as memory dysfunction.
However in an exciting breakthrough in diagnostic tools, clinicians have found a quick and effective way to diagnose this form of dementia with a simple test that focuses on the subtle differences between the diseases, which takes just a few minutes and can be completed in a doctor’s office.
Dr. James E. Galvin, a professor and associate dean for clinical research at the Charles E. Schmidt College of Medicine at Florida Atlantic University, has created a 3 minute test of 10 questions called the “Lewy Body Composite Risk Scale” (LBCRS). A patient must only get three “yes” answers to qualify as having LBD.
To test its effectiveness, 256 patients of varying demographics and diagnoses were given the test. The scores showed a 96.8% accuracy and were published in the journal Alzheimer's & Dementia
“Alzheimer’s patients have difficulty learning new information, whereas non Alzheimer’s-dementias, including LBD, are better able to learn information but have difficulty retrieving information,” Galvin says. “In the absence of a biomarker, you need a tool that can capture these symptoms and frame them in a way that every clinician can ask every patient the same questions and either rule it out, or make the diagnosis likely.”
The test is not yet available as it requires more funding for further research, but hopefully soon millions of people will be properly diagnosed early on, and treated accordingly.
Until a cure for dementia is found, the condition and abilities of a person with Alzheimer’s will always be deteriorating. The rate at which this deterioration takes place differs from one person to the next. Everyone in late stages of Alzheimer’s will need a full time carer.
What to expect from late stage Alzheimer’s:
Advanced memory loss
This is one of the most distressing times for family members and carers as the person with Alzheimer’s may not recognise them or may confuse them with long dead relatives such as their own parent.
A person with late stage Alzheimer’s will suffer from an increasing inability to follow what is being said or understand what is happening in their immediate environment. They will gradually lose their ability to speak, although they may try to communicate with noises. A person should not be left without interaction at this stage, as there is little information pertaining to exactly how much cognition is left after loss of speech, and there may still be some level of emotional perception that remains.
Inability to eat
This is a very worrying symptom of late stage Alzheimer’s as a person may forget how to eat or drink or will not recognise what it is they are expected to eat. Difficulty swallowing also becomes a problem. For these reasons it is common for a person at this stage to lose a considerable amount of weight. At this point carers may have to offer supplements and possibly a feeding drip.
Being a carer for someone with late stage Alzheimer’s, particularly if you are not a professional carer and are looking after a loved one, can be one of the most difficult times to ever have to endure. Remember that you are never alone and should not hesitate to seek the advice and support of medical professionals as often as you need it. Lean on family and friends for emotional support in order to avoid carer stress and eventual burnout.
A project funded by the US military to find a way to help soldiers with brain injuries overcome memory loss, has inadvertently resulted in scientists potentially developing an electronic implant to help brains damaged by Alzheimer’s. The implant could potentially help retain memories by taking over certain areas of diseased brains to help convert a short-term memory into one that is permanent.
Researchers have previously used implanted devices to enable people who are paralysed to move false arms together with their own limbs. This new technology for brain disorders has already reached human test stage and has been tested on nine people in the United States with epilepsy, to treat chronic seizures.
Alzheimer’s is caused by a build- up of amyloid proteins which causes the brain to degenerate and become unable to retain new long term memories. The device includes a small array of electrodes which are designed to potentially replicate the function of the hippocampus, which is to retain memories, in a damaged or diseased brain. The researchers read the electrical signals that are created in the patients’ brains after being asked to conduct simple tasks. A computer program is then developed that could determine with 90% accuracy how the signals would translate. The ability to predict brain signals means the potential for scientists to create technology which can support or replace the functions of damaged sections of the brain.
Speaking at the IEEE Engineering in Medicine and Biology Society conference in Milan, the head of the project Ted Burger said “It’s like being able to translate from Spanish to French without being able to understand either language.”
While this exciting new technology is the first time ever that scientists anywhere, have used computers to manipulate memory signals directly in the human brain, an implanted device could only effectively slow down the progression of symptoms of Alzheimer’s, but it will not be able to reverse or cure the disease.
Caring for someone full time is stressful and exhausting. It also does not begin at 8am and end at 5pm, nor are there any weekend breaks. This is where the condition “caregiver burnout” stems from; a common effect of a carer not taking any time for themselves. Respite care offers a short term care solution to a patient in order for a full time carer to take a break from their duties and “recharge”.
Without respite, a carer can suffer from the debilitating side effects of extreme stress, which may render them unable to function or may result in certain life-threatening conditions.
Carers can choose to take a day or even a few weeks off using the various options available. Patients can be cared for by a family member at home, a volunteer, or a paid service either in the home or at an adult day care facility. There are also a variety of respite care options that you can consider. Such as:
- Companion services for supervised activities at various times of the day.
- Home health or care aide services to assist with daily activities such as bathing, going to the toilet, getting dressed and exercising.
- Nursing services to ensure medications are properly administered or dressings changed frequently.
- Night services if a carer is not getting adequate sleep due to a patients restlessness at night.
- Cleaning services to help with cleaning, laundry, shopping and preparing meals.
You owe it to yourself
It is common for a caregiver to feel guilty or undeserving of a break. They may feel terrible about leaving someone who trusts them. These feelings can arise regardless of whether a carer takes a few hours or a few weeks off. However, caring has to be seen in the same way as any other paying job, and no professional would work non-stop without any time off to take care of themselves and do things they enjoy outside of their daily duties.
If you are a carer and feel you could not leave the person you care for, then you must speak to a medical professional who can advise you on ways to cope and the various respite options available to you.
The Dementia Friends programme is the Alzheimer’s Society’s largest initiative ever, aimed at changing people’s perceptions of dementia and ridding communities of harmful stigma’s attached to the disease.
There is widespread fear not only of being afflicted with dementia, but also of interacting with those who are already battling the disease, which is why people instinctively shy away from friends and family who have to deal with it and avoid the subject altogether. Dementia Friends was launched to eliminate the isolation, loneliness and social exclusion that comes as a result of this lack of understanding.
There are currently approximately 900 000 people in the UK with some form of dementia. Becoming a Dementia Friend means helping people understand the disease better, in order to drive out the fear with knowledge. There are also well over one million Dementia Friends across England and Wales, spreading knowledge and understanding about people living with dementia and offering practical and useful ways to help those throughout their communities. This could be to help care for a family member, to volunteer care services or just to be more patient in a queue in order to help people with dementia feel safe and included as community members. The program has been so successful that the Alzheimer’s Society has set a target of enlisting 4 million Dementia Friends by 2020 to help as many communities and businesses as possible to become dementia-friendly.
You can sign up to become a Dementia Friend or even just watch the videos to educate your organisation about ways you can help those within your community. There is also the option to become a Dementia Friends Champion. Champions are trained to run support and information sessions within their own communities. Dementia Friends also work with many different sized across all sectors in order to support them to roll out Dementia Friends throughout their workforce.
Talking is not the only method of communicating with someone who has Alzheimer’s. Sensory stimulation can be equally as effective in keeping the brain active.
The 5 Primary Senses
Sight, taste, smells, sound and touch can all be used to encourage a response, this is because these primary sensory areas are mostly unaffected by Alzheimer’s. It is a gift to allow an unresponsive person the opportunity to respond in some way to the world around them, even if it just means reactivating the smallest sensation of perceiving pleasure or curiosity in their immediate environment, which extends into their daily lives.
In many cases it has been known to awaken areas of the brain to the point where small tasks such as stirring tea, and verbally responding to simple questions or statements come as a direct result of sensory stimulation. Of course not everyone who is disabled into a non-responsive mode by the disease will show such marked improvement, but there is definitely a subconscious response which elicits certain feelings. That in itself stirs up areas of the brain that can otherwise shut down when memory and verbal communication is removed.
Introducing Sensory Communication
The best way to introduce sensory communication is to go back to the time before symptoms of the disease struck. Find something that will be familiar to the person with Alzheimer’s, the more familiar the better. Try and use everyday objects and only focus on one sense at a time. If you are using flowers for example, place the item into their hands and allow the person to get used to feeling the leaves, the stem and the petals of the flower before encouraging them to use their sense of smell by lifting the flower to their nose. If they are able to, then re-teach them how to respond to the item, such as putting flowers in a vase and always talk about what you are doing using familiar terminology.
As a carer, try to view everyday tasks as a series of opportunities to encourage non-verbal communication with a patient. Just remember not to push someone if they seem tired or show signs of frustration. These sensory experiences should always elicit positive feelings and memories.
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