What is Parkinson’s Disease Dementia?

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

What to do if dementia patients stop eating?

People with dementia may experience difficulty eating, swallowing, and drinking as the disease progresses. Although this behavior can occur at any stage of the disease, it tends to be most common in the late stages.

In late-stage dementia, the difficulty in swallowing limits the intake of food and drinks. This time can be difficult and emotional for the family or the caregivers of the patients as they have to figure out how to maintain the eating and drinking of their patients or loved ones.

What causes swallowing problems?

Eating and drinking is a complex procedure involving the brain’s control center and powerful muscles in the neck and throat. As dementia advances, it affects the brain regions that control swallowing. As a result, the patient exhibits symptoms, such as coughing or choking, clearing the throat, grimacing when swallowing, excessive motion of the mouth or tongue, refusal to swallow or keep food in their mouth, and even spitting food out. The caregiver usually notices these symptoms rather quickly.

Another reason for these problems is the weakening of swallowing muscles. Furthermore, due to changes in sensation and sensory perception, some people may feel the consumption of food becomes different and even unpleasant at times.

Having sensitive teeth or a sore mouth can also lead to swallowing problems. In this case, you should get your patient to visit a doctor and dentist as soon as possible for review.

If dementia patients do not eat, will they die of dehydration or starvation?

In late-stage dementia, the individual gradually develops swallowing problems and may stop eating. However, that does not imply that the patient will die due to starvation or dehydration. The food and fluid intake gradually decreases as the disease advances to the end, and the body slowly adjusts to it [1]. The brain regions responsible for basic functions start shutting down at this stage. The disease also seriously affects the brain regions that control hunger and thirst [2].

The movement and activity of the late-stage dementia patient also declines, and so does the calorie requirement. This observation can help the caregiver understand why not as much food or drink is required. A health care provider can examine the situation and make recommendations [2].

What is artificial nutrition and hydration (ANH)?

Artificial nutrition and hydration (ANH) refer to methods used to provide food and fluids to individuals who have impaired swallowing and can not eat through the mouth. Generally, ANH administration involves feeding with a tube. The tube either passes from the nose and into the stomach (nasogastric tube) or directly enters the stomach wall via a hole (gastrostomy). Another method is the intravenous (IV) or subcutaneous (SC) administration of fluids. ANH is often difficult for a person with dementia.

Is ANH a good decision?

A majority of health care professionals suggest that because patients with late-stage dementia are near the end of life, they should not be given ANH. It requires hospital admission that can be stressful for the patient, who might also try to pull out the tubes and drips, leading to infection and soreness at the insertion sites.

Some recent studies suggest that ANH can be more harmful than beneficial [3,4]. Giving food and fluids via tube does not stop choking or coughing, reduce chest infections, improve the healing of bedsores (pressure ulcers), improve the quality of life, or prolong life. Furthermore, the food can also get into the lungs, causing aspiration pneumonia. According to another study, the post-insertion mortality rate in late-stage dementia patients was 64.1%  with average survival of 56 days. About one-third of people with late-stage dementia died within a year after receiving a feeding tube [5].

Is the dementia patient suffering?

As a caregiver, you might be concerned if your patient or loved one is suffering. Caregivers or family members are often unaware of why their patients do not want to eat. Understanding that these eating problems are a normal part of the disease may help you feel assured that they are not suffering [2]. Most of the patients will not exhibit signs of hunger or thirst, but if they do, seek medical advice and get recommendations on what alternatives you can give in order to keep them comfortable.

Should you continue giving food and fluids through the mouth?

Yes. You should encourage your patient who can eat and drink, even if it is only a spoonful or sips of drink. Also, you should help them have fluids and foods that are as safe as possible. Examples would be soups, purees, etc.

Some helpful ideas for caregivers

If the patients want to eat or drink, despite having difficulty with swallowing, you can give them small amounts of food and drinks at a consistency that is manageable and safe. Always seek the advice of a healthcare professional, such as a general practitioner or speech therapist, who will assess the patient and suggest the most suitable consistency.

You should rule out physical problems that might make swallowing difficult, such as mouth sores, ill-fitting dentures, infections, or toothache. Changing the food or drinks may help. Consider soft and flavored food that requires minimal chewing, and avoid solid and mixed foods (such as cereals).

A balanced diet is not necessary at this point. Instead, focus on giving the patients food they desire and enjoy, or that they can swallow. A dietitian, however, can recommend nutrient supplements.

Before giving food or fluids, you should ensure that the person is in a good and comfortable position. Your patient should be fully awake and as upright as possible.

Lastly, give your patient some extra time and effort to make them enjoy the meal as much as possible.

References

[1] Gallagher, R., 2011. Swallowing difficulties: a prognostic signpost. Canadian Family Physician, 57(12), pp.1407-1409.

[2] Feeding Choices for Patients with Advanced Dementia.

[3] Ying, I., 2015. Artificial nutrition and hydration in advanced dementia. Canadian Family Physician, 61(3), pp.245-248.

[4] Feeding Tubes for People with Alzheimer’s.

[5] Kuo, S., Rhodes, R.L., Mitchell, S.L., Mor, V. and Teno, J.M., 2009. Natural history of feeding-tube use in nursing home residents with advanced dementia. Journal of the American Medical Directors Association, 10(4), pp.264-270.

[6] Eating and drinking at the end of life.

[7] The Decline of Tube Feeding for Dementia Patients.

Strategies To Cope With Hallucinations & Delusions In Alzheimer’s & Dementia

As the brain undergoes complex changes, people afflicted with Alzheimer’s disease or other types of dementia often see, hear, or even smell non-existent things. These behavioral issues are known as hallucinations and delusions. Hallucinations and delusions may seem similar, but they are characteristically distinct behaviors.

While hallucinations involve seeing, hearing, smelling, or feeling things that do not exist in reality, delusions are false beliefs and perceptions that the person considers to be true. Paranoia, a similar behavioral issue, is a type of delusion which leads the person to have irrational suspicion or mistrust of others by believing that they are mean, unfair, lying, or trying to threaten or harm them.

Hallucinations usually occur in the middle or later stages of dementia. They are more common in people with Lewy body dementia and Parkinson’s disease than in Alzheimer’s and other types of dementia. On the other hand, nearly half of all people living with any form ofdementia form, including Alzheimer’s disease, can experience delusions.

Are hallucinations and delusions only caused by dementia?

Hallucinations and delusions are not always due to dementia. Several other factors can also cause these behavioral issues, including:

  • Sight or hearing problems
  • Illnesses such as fever, stroke, seizure, migraine, etc.
  • Other severe mental disorders such as schizophrenia
  • Medications such as stimulants and steroids (that can affect the brain)
  • Alcohol and drug use or withdrawal

Tips for coping with hallucinations and delusions in Alzheimer’s patients:

You must be careful while responding to this behavior of your Alzheimer’s or dementia patient. The first step is to examine the situation and determine if hallucinations and delusions are causing considerable trouble for you or your patient. Is this behavior upsetting? Is it making the person do something harmful or dangerous? Or, is your patient getting frightened by seeing an unfamiliar face? If so, you can use the following strategies to help cope with the situation.

1. Offer reassurance

Offering reassurance can help calm down your patient or family member. Respond calmly with reassuring words in a supportive manner. You may gently pat them to turn their attention towards you, which can help reduce hallucinations.

2. Respond honestly

One way to avoid an argument is to respond honestly when your patient asks you about a hallucination or delusion. For instance, honestly tell the person that you do not see anyone (in a gentle and assuring way) if they inquire about it.

3. Use distractions

Distracting an Alzheimer’s or dementia patient can help them effectively cope with hallucinations and delusions. Frightening hallucinations tend to ease up in brightly-lit rooms and where people are present. So, you can take them to another room by suggesting a walk in that case. Furthermore, you can distract a person with conversation, music, or other activities you enjoy together.

4. Modify the environment

Environmental modifications can also help respond to hallucinations and delusions of your patient. You can check for and remove sounds that they may misconceive and cover or remove mirrors to eliminate the possibility of your patient taking their reflection as a stranger.
Another way is to look for lighting that casts reflections, shadows, or distortions on the walls or floor. You can reduce the shadows by turning on the lights.

How are these behavioral symptoms treated?

The cause of hallucinations and delusions determines their treatment. If Alzheimer’s disease or any other dementia is causing these issues, then the first line of treatment is to address them with non-drug approaches. In case the symptoms are severe and these strategies fail, doctors may prescribe some medications, known as antipsychotics, to relieve the symptoms for some time. However, doctors do not usually recommend them due to poentially harmful side effects, including stroke, fall, or heart attack.