Category: Blog Post

Staying in a hospital can be an unpleasant experience for anyone, but it may specifically be hazardous for people with Alzheimer’s disease and other forms of dementia. Situations such as changed routine, unfamiliar people poking, an entirely different environment, etc., can make the stay a challenging experience for them.

According to studies, people with dementia have an increased risk of experiencing adverse outcomes¹ following hospitalization. Even a brief stay can exacerbate the dementia symptoms and augment the risk of complications, including falls, dehydration, malnourishment, delirium, and hospital-acquired infections.

Due to the mentioned reasons, caring for your loved one with Alzheimer’s or dementia in a hospital can be a daunting task. However, some tips can help you make their hospital stay a bit convenient.

Prepare Beforehand

Whether your patient has a scheduled treatment or unexpectedly ends up in the emergency department, it is critical to have a few essential items on hand. An already prepared and packed hospital kit can come in handy in emergencies. You should include the current insurance information and relevant health information, such as a comprehensive list of medications, a brief medical history, and a copy of the medical power of attorney document.

While planning for the stay, think of the things that can make your patient’s hospital stay easier. Take along items such as a cherished photograph album, a favorite book or puzzle, or a prepaid topped-up mobile phone with easy-to-locate contact numbers to keep them engaged.

Before your arrival, it will be helpful to call the hospital ward to know what services they can provide to dementia patients.

Provide Comfort And Reassurance To Your Dementia Patient

Hospitals may appear loud and unfamiliar to dementia patients, making them confused and agitated. They may not know where they are or why they are there. Therefore, it is essential to explain to them the place and why they are there in a calm manner. Try to be gentle and reassuring to make your patient feel at ease.

Since the noise at the hospital can scare the patient and add to their anxiety, check that their hearing aids are on and adjusted as per new surroundings. Ask the staff if there is a day room for the patient to take a break from the ward, especially at the peak times (such as visiting hours or ward rounds).

Another way to provide reassurance is to talk to them, read to them, and support them emotionally since familiar faces can bring comfort to dementia patients in such situations.

Share Information About Your Dementia Patient With Staff

It is helpful to discuss your loved one’s behavior and dementia symptoms they exhibit with the hospital staff because the staff might not know that the patient has dementia or may not have experience dealing with dementia patients. Sharing information about the person will help the staff to understand and respond to them more effectively.

You can give details of the person’s daily routine, the food they like or dislike, difficulties they have during mealtimes or while communicating, sleeping patterns, or any other information that can help staff build a good relationship with the patient. It is also necessary to let the staff know if your loved one needs reminders or assistance with activities such as eating, drinking, dressing, taking medication, or going to the toilet.

Support Your Loved One With Dementia To Eat And Drink

Hospital stays can considerably impact the mealtimes of dementia patients, who can become stressed, dehydrated, and malnourished. If ward mealtimes occur outside of visiting hours, you can ask the staff if you can stay after these timings. As hospital staff is often busy at mealtimes, they may be grateful for any assistance you can provide. So, it will be helpful to be there for mealtime or bring extra food if you can.

Since you may not always be around for assistance, it would be better to let the staff know about any difficulties your patient has at mealtimes.

You can make your patient’s mealtimes easier by having a drink or snack with them. If they do not seem to eat, do not presume that they are not hungry. Instead, try engaging them in different ways and making food seem more appealing.

Support Your Patient If They Are Walking About

A person with Alzheimer’s disease or other types of dementia might attempt to get up and roam around the ward. As the patient must be safe, this behavior can make the staff worried. However, walking can be a great activity to stay active in the hospital.

If the patient wants to walk around the ward, and it is safe and possible, ask the staff to assist them. Some dementia patients may become stiff if they do not move around, increasing the risk of falls. So, explain to the staff why it is important for your patient to walk around.

Sometimes, the person may feel angry, threatened, or agitated if they are prevented from walking around. In such cases, you can ask the staff to make any adjustments to help them. For instance, they can let them walk when they have visitors.

Stay By Your Loved One’s Side

When it comes to keeping a senior calm in the hospital, a familiar face may do wonders. Make every effort to spend as much time as possible with your loved one, especially in the evenings, during meals, and while medical tests and procedures like IV insertions and vital sign checks are carried out. If you are unable to visit the hospital regularly, attempt to arrange for other family members to do so.

Alzheimer’s Research Association is committed to helping caregivers of Alzheimer’s disease and dementia by providing the latest news and research on Alzheimer’s, useful tips, and grants. For more information, contact us!

References

1. Fogg, C., Griffiths, P., Meredith, P. and Bridges, J., 2018. Hospital outcomes of older people with cognitive impairment: an integrative review. International journal of geriatric psychiatry, 33(9), pp.1177-1197. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6099229/

Alzheimer’s disease is frightening and overwhelming for both the patients and their caregivers. While people with Alzheimer’s may experience grave difficulties due to illness, caregivers often feel pressured and exhausted with increased demands and responsibilities.

Technological advancement has provided promising solutions to ease the burden and anxiety of caregiving and to make people with Alzheimer’s disease and dementia feel safer and more comfortable.

The technology that is specifically designed to help people suffering from dementia do things in everyday life is known as assistive technology. This technology helps promote independence and autonomy among seniors, reduce stress, and manage potential risks at home.

Assisted technology includes a range of innovations such as ‘smart home’ systems (that you can instruct to switch off the lights or turn on the heating), electronic pill boxes (that remind you to take medication), and many more. Alternatively, general technology, such as mobile phone apps, may also help caregivers in their caregiving endeavors and Alzheimer’s patients in staying active.

The following are some of the helpful technologies for caregivers and dementia patients.

1. Memory Problems and Management of Daily Activities

There are a variety of devices that can assist if your patient’s memory loss is interfering with their daily life. Each device typically functions by providing a visual, verbal, or audible reminder to do something.

(i) Automated Reminders

Several devices are available for setting reminders, and you can customize them as per your needs. Some may include a voice recording of you, a family member, or a friend. You can record messages on the devices that set reminders and play them to remind the person to take medicine at the right time or perform other activities when you are not around. Others can detect motion and play a pre-recorded message upon sensing movement.

(ii) Clocks and Calendars

Automatic calendar clocks, specifically designed for dementia patients, are available to help them distinguish the day of the week and the time of the day. Talking clocks and clock and calendar apps are also available to assist caregivers in managing the memory issues of their patients.

(iii) Medication Aids

Medication aids may help people with dementia take their medicine at the right time. They can be simple, like a pillbox, or advanced, like automatic pill dispensers. Simple pillboxes have separate sections for days of the week and times of the day. Automatic pill dispensers, on the other hand, are pre-filled and locked. The dispenser sets off an alarm when it is the time to take medicine, and the right section opens so that you can have the right pills.

(iv) Locator Devices

People with Alzheimer’s disease may wander. GPS location and tracking devices may help caregivers cope with such situations. You can have your patient wear them so that their alert system lets you know if the person has left a particular area. Some locator devices can also help the patients find misplaced items. A small electronic tag is attached to the objects, which helps locate them.

(v) Vision and hearing aids

A wide range of devices is available to help people with Alzheimer’s disease and dementia with sight and hearing problems. For instance, handheld magnifiers and electronic magnifying video screens can be used for sight, while hearing aids and amplified phones (with louder speech volumes and ringtones) can be used for hearing issues.

2. Technology for Safety

Assistive technology encourages independence and helps make the home safer for Alzheimer’s patients. While assistive technology can help curtail risks, it does not entirely eliminate them. Technology that makes you feel safe can be a huge help and an essential part of living well with dementia. It could include the following:

• Automatic lights that turn on upon sensing movement and turn off when the room has been empty for a set time.
• Water isolation devices that automatically turn off the tap if left running.
• Fall sensors automatically detect and get immediate assistance for the person susceptible to falls.
• Automated shut-off devices that turn off a cooker or stop the gas supply if the gas is on.
• Special plugs that let you keep the required water depth in a sink or bath. If the water level rises above a certain level, the plug opens and drains the water. They can also have heat sensors that change the plug color upon getting too hot, preventing burns.

(i) Telecare Systems

Telecare systems are another way of ensuring the safety of your patient. These systems allow people with Alzheimer’s disease or dementia to live independently, knowing that their family or friends will be notified if they run into a problem.

Telecare systems may include sensors, movement detectors, community alarms, and video calling. An alarm is linked to a particular person or a call center, who gets alerted when a sensor detects an issue and when the patients themselves press a panic button or community alarm. These systems require a telephone line or an internet connection to function.

Various telecare systems are available for different situations, including community alarms, monitored medication reminders, and sensors (for example, water, temperature, door, and movement sensors). Bed or chair sensors are put on the bed or chair and alert the family or friends if the patient gets up and does not return after a particular time or does not get up in the morning.

3. Socializing and Doing Things Your Patient Enjoy

Assisted technology can help your patients socialize, stay engaged, and do things they enjoy. A variety of apps are available for mobile phones and tablet devices to help the person remain active. Besides, other technological innovations, ranging from simple to sophisticated ones, can also assist them in achieving these goals. These include phones (pre-programmed with numbers), video chat, communication apps, social media, online forums or communities, sensory devices (that use touch, sound, and light to stimulate senses), and digital games and puzzles. Digital photo frames are also available that can make the patient reminisce about their life events by viewing a slideshow of photos.

What is Posterior Cortical Atrophy?

Posterior cortical atrophy (PCA), also known as Benson’s syndrome, is a rare degenerative brain and neurological disorder caused due to a gradual and progressive deterioration of the cortex (the outer layer of the brain) at the back (posterior regions) of the brain. This ailment usually affects eyesight and the ability to process visual and spatial information.

What Causes PCA?

It is unclear whether posterior cortical atrophy is a distinct disorder or a possible variant of Alzheimer’s disease. In many people with PCA, the affected parts of the brain exhibit the presence of amyloid plaques and neurofibrillary tangles, which is similar to Alzheimer’s disease but in a different area of the brain. However, in some people, the brain changes are similar to other diseases like Lewy body dementia or a type of Creutzfeldt-Jakob disease. Alzheimer’s disease typically occurs at age 65 or above, while PCA occurs between 50 and 65.

According to researchers, approximately 5% of people diagnosed with Alzheimer’s have PCA. However, because PCA is not often recognized or diagnosed, the actual percentage may be as high as 15%.

Symptoms of PCA

The symptoms of PCA and its progression vary from individual to individual. The most common symptoms are related to the deterioration of the posterior cortex, the part of the brain involved in the processing of visual information. Neurological damage results in the gradual development of difficulties with visual tasks such as:

• Trouble reading a line of text
• Incorrectly judging distances
• Disorientation
• Difficulty differentiating between stationary and moving objects
• Inability to distinguish more than one object at a time
• Difficulty identifying and using everyday objects
• Problem with spelling or mathematical calculations

Many people with posterior cortical atrophy may also experience the following behavioral symptoms:

• Hallucinations
• Confusion
• Anxiety
• Personality and behavioral changes

People with PCA generally do not exhibit a considerably reduced memory in the early stages of the disease. However, it can affect the memory in later stages.

Diagnosis

Posterior cortical atrophy is an unusual and rare disorder and, therefore, misdiagnosis is common. Since the eyesight problems are the initial symptoms, most people with PCA seek the advice of an ophthalmologist, who may perform regular eye examinations with their usual tests. Cortical brain dysfunction is not initially considered to be the cause of the symptoms.

Currently, there are no diagnostic tests to precisely diagnose PCA. For diagnosis, doctors use a combination of tests, including blood tests, neuropsychological tests, neurological examinations, and brain scans (MRI and PET scans). They also conduct ophthalmology examinations to determine whether the eyesight and vision problems are due to any other condition besides PCA. Finally, the disease is diagnosed by ruling out other possible explanations for symptoms.

The gradual emergence of visual symptoms with retention of normal eye function and memory are characteristic features that the physicians occasionally observe for diagnosis. Furthermore, the age of onset of PCA (50 to 65 years) also provides a clue about the disease. The diagnosis should rule out the chance that the symptoms are due to a stroke, tumor, or other recognizable disorder.

Treatment of PCA

No treatments are currently known to slow the progression of posterior cortical atrophy. Since it resembles Alzheimer’s disease in some people, it is suggested that the medications used for temporary treatment of Alzheimer’s symptoms may be effective in treating PCA, but it is not proven. Some patients may temporarily treat symptoms such as anxiety or depression, but the overall risks or benefits of such treatments are unidentified.

Alzheimer’s Disease and Posterior Cortical Atrophy

Discussion is ongoing in the field to determine whether posterior cortical atrophy should be regarded as a subtype of Alzheimer’s disease or a separate disorder. Brain imaging suggests that the posterior cortex in PCA patients is thinner than in healthy people of the same age, indicating a decreased brain volume in the former. Moreover, although the diseases often overlap, the brains of PCA patients show degeneration in different portions than those of patients with typical Alzheimer’s disease.

Similar to Alzheimer’s disease, the cause of PCA is still not known. There are no known genetic factors or mutations that can cause PCA. It is also unclear whether the risk factors of PCA are the same as Alzheimer’s disease.

Parkinson’s disease is a progressive neurological disorder of the central nervous system that affects an individual’s mobility and ability to perform regular activities. It typically occurs in older adults over the age of 65. The disease impacts physical movements, but the patients can also exhibit impairment of mental functions, thought processes, and memory. This condition is known as Parkinson’s disease dementia and can develop in people living with Parkinson’s at least one year after diagnosis.

Parkinson’s disease initiates in a part of the brain involved in movement. Therefore, its early symptoms include muscle stiffness, tremors, stooped posture, a shuffling step, lack of facial expression, and problem initiating movement. As the disease advances, in the brain changes gradually spread and often start affecting cognitive functions such as memory, judgment, attention span and ability to plan steps for completing a task.

What causes Parkinson’s disease dementia?

The chief brain changes responsible for Parkinson’s disease and Parkinson’s disease dementia are the formation and abnormal deposition of Lewy bodies, the neuronal inclusions chiefly composed of alpha-synuclein protein. Alpha-synuclein protein is abundantly present in the brain, but its function is not fully understood.

Lewy Bodies are also the hallmark of Lewy body dementia (LBD) and may be present in other brain disorders, including Alzheimer’s disease. Research shows that LBD, Parkinson’s disease, and Parkinson’s disease dementia may be due to similar underlying abnormalities in alpha-synuclein processing in the brain. Researchers have also discovered the presence of plaques and tangles, the hallmarks of Alzheimer’s disease, in the brains of people with LBD and Parkinson’s disease dementia.

A recent study¹ suggests that the problematic nature of Lewy bodies is because they pull out alpha-synuclein protein from the nucleus of brain cells. According to the study (which was performed on a mice model), these proteins carry out DNA repair in the cells, which may be pivotal in preventing cell death. The possible loss of this function in brain disorders like LBD and Parkinson’s disease dementia might be responsible for the widespread death of neurons.

What are the risk factors?

About 50 to 80% of Parkinson’s patients eventually develop dementia with disease progression. According to some studies, the patients develop dementia approximately 10 years² after Parkinson’s disease onset.

Certain factors present at the time of Parkinson’s diagnosis may increase the risk of acquiring dementia in the coming years. These risk factors include aging, severe motor symptoms, and mild cognitive impairment (MCI). Experiencing hallucinations before manifesting other dementia symptoms and excessive daytime sleepiness may also indicate an increased dementia risk.

Another risk factor is a Parkinson’s symptom pattern called PIGD (postural instability and gait disturbance), which includes freezing mid-step, balancing problems, difficulty initiating movement, shuffling, and falling.

Symptoms of Parkinson’s disease dementia

Following are the most common symptoms of Parkinson’s disease dementia:

• Changes in appetite and energy levels
• Hallucinations, delusions, and paranoid ideas
• Changes in memory, judgment, and concentration
• Muffled speech
• Depression, anxiety, and mood swings
• Difficulty interpreting visual information
• Loss of interest
• Sleep disturbances such as rapid eye movement (REM) sleep disorder and excessive daytime drowsiness

How is Parkinson’s disease dementia diagnosed?

There is no single precise test or combination of tests for diagnosing Parkinson’s disease dementia. Following are the guidelines for making a diagnosis:

• The diagnosis is Parkinson’s disease dementia if an individual is initially diagnosed with Parkinson’s disease due to the manifestation of movement-related symptoms, and dementia symptoms do not appear until a year or more.
• If the dementia symptoms consistent with LBD develop first or present with movement-related symptoms or occur within a year after movement symptoms, the diagnosis is LBD.

What is the treatment?

Currently, no treatment is available to slow or stop the neuronal damage due to Parkinson’s disease dementia. However, improving the symptoms may help provide temporary relief to the patient. In the case of medications, remember to have a thorough conversation with a doctor to know which drugs will be most effective.

Doctors may prescribe drugs for treating the symptoms:

1. Cholinesterase inhibitors drugs (used for treating cognitive changes in Alzheimer’s disease) may alleviate the symptoms of Parkinson’s disease dementia, such as sleep disturbances, hallucinations, and behavioral and cognitive changes.
2. Carbidopa-levodopa may treat movement symptoms. However, it may cause complications such as aggravation of confusion and hallucinations in Parkinson’s dementia or LBD patients.
3. Clonazepam and melatonin may be prescribed for the treatment of REM disorder.
4. Selective serotonin reuptake inhibitors (SSRIs) can help treat depression.

Doctors usually avoid prescribing antipsychotic drugs. Approximately 60% of LBD patients exhibit worsening Parkinson’s symptoms, impaired swallowing, sedation, or neuroleptic malignant syndrome (NMS). NMS is a severe condition that may occur after exposure to traditional antipsychotics and is characterized by fever, rigidity, and muscle breakdown.

References

1. Schaser, A.J., Osterberg, V.R., Dent, S.E., Stackhouse, T.L., Wakeham, C.M., Boutros, S.W., Weston, L.J., Owen, N., Weissman, T.A., Luna, E. and Raber, J., 2019. Alpha-synuclein is a DNA binding protein that modulates DNA repair with implications for Lewy body disorders. Scientific reports, 9(1), pp.1-19.
   https://www.nature.com/articles/s41598-019-47227-z
2. Parkinson’s disease dementia. https://memory.ucsf.edu/dementia/parkinsons/parkinson-disease-dementia