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About Alzheimer’s Disease

Alzheimer’s disease is the most common dementia disease. It becomes evident through difficulties remembering and problems finding the right words for every day things. It is especially short term memory that deteriorates, such as remembering names of close family. It also becomes more difficult to do mundane tasks like finding the way or counting small amounts of items.

As the disease progresses, changes in emotions, temper and personality will also occur. Outgoing, active and sociable people can become unpredictably irritable, passive and confined. Mood swings are also common.

Cluttering and clouding of the mind

The disease is caused by the deposition of two different proteins in the brain. The two proteins are called beta-amyloid and Tau. Beta-amyloid settles between the nerve cells where it forms so-called plaque. Tau lays inside some of the nerve cells, forming tangles.

Both types of protein deposits are seen in various other dementia afflictions, but the combination and distribution in the brain is specific to Alzheimer’s disease. In Alzheimer’s, the onset is often in the areas of the temporal lobe that control remembrance. Therefore, the memory is particularly affected.

Alzheimer’s disease is ultimately fatal and has yet to be cured or prevented, but medication may slow down the symptoms temporarily, and prolong the progression of the disease.

Taking Care Of A Person With Alzheimer’s

Caring for people with Alzheimer’s consists of a wide array of tasks within a large and very extensive area of caregiving. It includes the time during the early disease onset, the point when the dementia diagnosis has been made, the care during the progression of the disease and the care throughout the last phases of life.

Early care

Care in the early stages of the disease may not take the form of traditional caregiving. Instead, what is needed may be a range of initiatives in the form of counselling, teaching, providing permanent contact person(s), information material, opportunities to socialize and practical help in everyday life.

Person-centred care

This type of care is important to a patient with dementia. The care is aimed at personalising the patient’s environment, as well as seeing their behaviour change and the possible psychiatric symptoms from the perspective of the afflicted. Person-centred care and attention is rooted in information about the patient’s life history, habits, values, needs, desires and preferences of the patient.

Communication

Communication is essential. Dementia has such large effects on the brain, it can be difficult for the afflicted to express personal needs, thoughts and feelings. Communication should go both ways and it is important that others try to understand and make sense of the patient’s communication – eg. by practicing active listening.

Physical care

People with dementia may have great difficulty understanding and performing many essential everyday personal routines such as eating, using utensils, washing themselves or brushing their teeth. Patients often struggle with balance disorders. Therefore, as Alzheimer’s progresses, physical care is also about helping patients to eat, maintain their personal and oral hygiene and preventing involuntary urination and falling.

Life’s final phase

Dementia patients have the same need for palliative care as others with a fatal diagnosis. Palliative care aims to improve the quality of life of both patients and their relatives when encountering the problems of an all-encompassing disease. Palliative care views life and death as a natural process and does not  try to accelerate nor postpone death, but instead seeks to ease both the physical and psychological pain towards the end. Palliative care is also about supporting and helping relatives during the patient’s illness, as well as relieving some of the grievances that patients and loved ones experience.

Caring for people with Alzheimer’s holds a wide array of concrete tasks within a large and very extensive area of caregiving. It ranges from the effort of the early disease onset, the point when the dementia diagnosis has been made, to the care during the progression of the disease and care through life’s last phase.

Early care

Efforts in the early stages of the disease may not take the form of traditional caregiving. Instead, what is needed may be a wide range of initiatives in the form of counseling, teaching, providing permanent contact person(s), information material, opportunities to socialize and practical help in everyday life.

Person-centered care

This type of care is important to a patient with dementia. The care is aimed at making the patient’s environment personally and individually suited for the patient – as well as seeing the changed behavior and the possible psychiatric symptoms from the perspective of the afflicted. Person-centered care and attention is rooted in information of the life history, habits, values, needs, desires and preferences of the patient.

Communication

Communication is essential, but because dementia affects the brain so thoroughly, it can be difficult for the afflicted to express personal needs, thoughts and feelings – as well as frustrating to try to grasp what the patient is trying to convey to the surroundings. Communication should go both ways and it is important that others try to understand and make sense of the intentions and meaning of the patient’s communication – eg. by practicing active listening.

Physical care

People with dementia may, because of the disease, have great difficulty understanding and performing many essential everyday personal routines such as eating, using utensils, washing themselves or brushing their teeth. Patients often struggle with balance disorders. Therefore, as Alzheimer’s progresses, physical care is also about helping patients to maintain their personal and oral hygiene, eat, as well as preventing and treating involuntary urination and falling.

Life’s final phase

Dementia patients have the same need for palliative care as others with a fatal diagnosis. Palliative care aims to improve the quality of life of both patients and their relatives when encountering the problems of an all-encompassing disease and approaching death. Palliative care views life and death as a natural process and does not  try to accelerate nor postpone death, but instead seeks to ease both the physical and psychological pain towards the end. Palliative care is also about supporting and helping relatives during the patient’s illness, relieving some of the grievances that patients and loved ones experience.

Taking Time Off With Alzheimer’s

Is a successful vacation with a patient with an Alzheimer’s even feasible? The answer is yes, but success requires taking into account the needs of the person with dementia. Here are some practical tips to take into consideration that may make holidays easier.

Before going away

Can the person with dementia handle being around many people, or are they more comfortable with just a few familiar faces? Are they suited for unexpected surroundings and experiences? Make sure to organise the holiday with the patient’s needs in mind.

  • Is it a good idea to travel with multiple people so there will be more support and help if any difficulties arise?
  • What causes frustrations for the patient in everyday life? Take that into account for the holidays too!
  • Try to avoid planning too much – it is important for everyone to have a “mental break” occasionally. Meticulous planning might often frustrate both patient and travel companions.

Convenience on holiday

Find pointers that help your patient to recognise where you stay the most, for example place a flag on the door.

Bring a GPS if necessary

Use pocket cards with the name and phone number of the contact, if you want to stay away from each other. The Alzheimer’s Association’s wallet can be ordered here.

Assistance and aids during the holidays

Search for places that are well-suited to the patient’s needs. If you need aides or assistive tools, there are several resorts that provide hospital beds and lifts that are suitable for wheelchair users. Book well in advance. For a stress-free holiday, try to make it easier for yourself, for example order dinner from a local restaurant and have it brought to the room rather than going out after a long day.

How is the research organized?

Research begins with the researchers who can be doctors, pharmacists or biochemists. They can be employed either in the pharmaceutical industry or work in independent research institutes. The researchers experiment with gene therapy, new active substances and new technology. Initial testing is conducted on mice or rats in the laboratory to document effects.

If the results of the animal testing prove successful, the next step is testing the drug on human subjects in clinical trials. This takes place where the patients are, such as in the hospitals and clinics. The responsibility for the next step of research is then passed on to the study nurses and doctors. The initial researchers are not allowed to be involved with the clinical trials to ensure they cannot affect the outcome.

Before a clinical trial can start, it must be approved by the health authorities in every country the trial takes place. The medical trial, in the form of a protocol, describes the purpose of the study in detail as well as how it is to be conducted. In addition, the Ethics Committee in all participating countries must approve the trial after carefully considering the ethical protection of the participants.

The clinical trials are conducted in four phases. Beginning with phase 1 and a small number of participants and proceeding to phase 4, with several thousand participants.

It typically takes 3-4 years, from the start of a clinical trial, until new medicine is ready to be released on to the market. Not every clinical trial has the positive outcome of new medication development.