A New Resource for Alzheimer’s Disease and Related Dementias Care

As we age, one of the dreaded diseases that occurs is Alzheimer's dementia or a related dementia. In fact, 11.3% or one in nine people over 65 has the disease. In other words, the chance of developing dementia is very common as we age. Dementia is also deadly and more people die of it than breast and prostate cancer combined. However, before patients with dementia die they and their caregivers, often family members, are burdened with the disease that is estimated to cost the country more than $355 billion - not to mention the enormous amount of time and concern care givers expend.

New Assistance

Arguably the best resource for patients, family, and friends with Alzheimer’s disease is the Alzheimer’s Association. But, in March 2021 the National Institute of Aging (NIA) went live with a brand new website designed to educate, assist, and be a new resource for the community concerned with this disease and related dementias. Concerned readers are urged to visit it for one-place answers to questions and up-to-date research information, and as a wonderful site for vital information about the disease and how to help patients and caregivers.

What is Dementia and Related Diseases?

Dementia is the loss of the normal ability to think, reason, and remember. It is a neurological disease that worsens with time. Although it is common and normal to begin to lose some memory with age, the losses with dementias are more profound and range beyond memory to the loss of the human faculties we know as thinking and reasoning. The losses result from pathologic changes to the brain. It is useful to understand the major dementias.

Alzheimer's Disease is a progressive dementia that destroys memory and thinking skills and the ability to perform normal daily functions like dressing. It is common and occurs increasingly as we age.

Frontotemporal dementia (FTD) is a rare disease that afflicts younger people and is a result of pathology in the frontal and temporal lobes of the brain. The frontal lobe changes alter behavior and the temporal lobe changes affect language and emotions. Patients with this disease have increasingly severe problems with behavior, language, and emotions.

Lewy body dementia (LBD) patients have problems with thinking, movement, behavior, and mood. There are about one million cases of this disease in the U.S. each year and it tends to occur in people the 50's. The brain develops abnormal deposits of protein called Lewy bodies that produce the changes in function.

Vascular dementia results from alterations in blood supply to the brain and can follow strokes or other abnormal events that impair blood flow to the brain with loss of normal brain function. The result is loss of memory, higher-order problem solving, thinking, and behavior.

Tips for People with Dementia

Each patient is unique and has unique opportunities to live with the disease. There are general tips that apply to most patients with any of the dementias. The major issue for patients is how to cope with the increasing loss of brain function. Thus, the strategies of living with the disease address this problem.

  • Write to-do lists and appointments, and have a readily available calendar to record these
  • Set up automated bill paying to avoid cancellation of important services
  • Ask a trusted family member or friend to assist with finances
  • Use delivery services such as Amazon for groceries and even prepared food
  • Establish a fail-proof self- medication system like pill box with daily/time of day compartments for pills
  • Have care plan prescribed by your physician for exercise and other tasks
  • Take a trusted friend or family member who takes notes to physician appointments

One of the many daily problems for dementia people is sleep. It is often interrupted and irregular. This should be discussed with a physician, but it is known that certain things like having very regular bedtime, cool room, and no stimulants like coffee, tea, computers, or even TV right before bed are helpful. It is important to have a clock and a light near the bed as well as a telephone with emergency numbers handy.

It is important to make the home as safe as possible for people with dementias. Falls can be deadly and are frequent so avoid furniture obstacles in rooms, have handrails for all steps, and remove small rugs that trip people. It is also important to consider, especially if living alone, safety devices that can be activated should a fall occur.

The final tip is to plan for the future. No one can forget President Ronald Reagan's announcement in 1994: "I now begin the journey that will lead me into the sunset of my life." With the diagnosis of a dementia, the uncertain foggy road to death begins. It is important to plan for the end of a life at this time rather than to leave it to a later time and others. All wishes and desires regarding end of life care and disposition of estate must be prepared not postponed.

Tips for Caregivers and Families of People with Dementia

Patients with these diseases need care and it often falls to family or friends. These people are directly and significantly impacted by the disease as well. In many ways as the patients slip into their cocoon of isolation from an engaged world, it is the caregiver who must be sure the patient is safe and as healthy as possible. This exacts an enormous physical and mental toll from the caregiver. There are tips for the caregiver just as for the patient.

  • Help the patient establish the tips provided above for the patient
  • Allow the patient to do as much as possible without help
  • Be gentle and respectful with patient
  • Make sure meals and daily tasks are at set times and places
  • Reassure patients when they are anxious
  • Remind the patient of familiar things, people, and who you are. Never ask “Don’t you remember?”
  • Optimize two-way communication using familiar objects/pictures, etc
  • Join activities with the patient (e.g., walking)
  • Concentrate on easy food preparation
  • Take time for yourself (caregiver) including planned absences
  • Join support group with other caregivers
  • Seek medical help and respite for yourself if you are becoming overwhelmed
  • Assist patient with all future planning

There often is a time when home care is not practical and the caregiver should help the patient recognize this and implement plans hopefully previously made.

The Bottom Line

The decline in mental function that is the hallmark of dementia is distressing for the patient, family, friends, and caregivers. The most important thing to know is that there are many resources available including this new one. Take advantage of the resources. Know that the road can be traveled with others and much needed support is available.