Unraveling Dementia: Understanding and Overcoming Its Challenges
Dementia is not a specific disease. It is rather a general term for the impaired ability to remember, think, or make decisions that interfere with doing everyday activities. Alzheimer’s disease is the most common type of dementia.
When I started my medical practice as family physician, I had to take care residents of two nursing homes. Many of them were having some degree of dementia. There was not much we could do for the dementia other than address their other medical and physical needs. That was over 50 years ago and not much have change in the medical treatment and care of dementia.
Dementia is caused by structural abnormalities in the brain tissue. Multiple biological factors (e.g. plasma tau protein, amyloid plaques build up in the brain tissue) and environmental factors (e.g. repeated head trauma, drug abuse) contribute to dementia. Diseases such as Alzheimer’s, Parkinson’s, AIDS, Syphilis, brain tumors, and metabolic disorders are causes of dementia. Excessive alcohol and drug consumption, severe vitamin deficiencies, as well as multiple head traumas such as repeated concussions can also contribute to dementia.
Is dementia inherited
- Alzheimer’s Disease:
- Early-Onset Alzheimer’s: This rare form of Alzheimer’s, which occurs before age 65, has a stronger genetic link. Mutations in specific genes (APP, PSEN1, and PSEN2) can cause early-onset Alzheimer’s and are inherited in an autosomal dominant pattern.
- Late-Onset Alzheimer’s: The more common form that occurs after age 65 is influenced by a combination of genetic, environmental, and lifestyle factors. The APOE gene, especially the APOE ε4 variant, is a known genetic risk factor, but having this gene does not guarantee development of the disease.
- Vascular Dementia: This type of dementia results from conditions that affect the blood vessels in the brain. While there can be a genetic predisposition to cardiovascular diseases, lifestyle and environmental factors also play significant roles.
- Frontotemporal Dementia (FTD): Some forms of FTD have a strong genetic component. Mutations in genes such as MAPT, GRN, and C9orf72 are linked to familial forms of FTD.
- Lewy Body Dementia: The genetic contribution to Lewy body dementia is less clear, but there is some evidence suggesting a familial link in certain cases.
- Other Factors: Besides these specific forms, having a family history of dementia can increase the risk, but it is not solely determinative. Many cases of dementia arise from a complex interplay of genetic, environmental, and lifestyle factors.
Overall, while genetics can play a role in the risk of developing dementia, it is often one part of a multifactorial process. Genetic counseling and testing may be recommended for individuals with a strong family history of dementia, particularly if early-onset cases are present.
Many people affected by dementia are concerned that they may inherit or pass on dementia. The majority of dementia is not inherited by children
- Normal Behavior. …
- Forgetfulness. …
- Mild Decline. …
- Moderate Decline. …
- Moderately Severe Decline. …
- Severe Decline. …
- Very Severe Decline.
How long can you live with dementia?
The average life expectancy figures for the most common types of dementia are as follows: Alzheimer’s disease – around eight to 10 years. Life expectancy is less if the person is diagnosed in their 80s or 90s. A few people with Alzheimer’s live for longer, sometimes for 15 or even 20 years.
Who is most likely to get dementia?
The biggest risk factor for dementia is ageing. This means as a person gets older, their risk of developing dementia increases a lot. For people aged between 65 and 69, around 2 in every 100 people have dementia. A person’s risk then increases as they age, roughly doubling every five years.
The number of Americans living with Alzheimer’s is growing — and growing fast. More than 6 million Americans of all ages have Alzheimer’s.
An estimated 6.7 million Americans age 65 and older are living with Alzheimer’s in 2023. Seventy-three percent are age 75 or older.
- About 1 in 9 people age 65 and older (10.7%) has Alzheimer’s.
- Almost two-thirds of Americans with Alzheimer’s are women.
- Older Black Americans are about twice as likely to have Alzheimer’s or other dementias as older Whites.
- Older Hispanics are about one and one-half times as likely to have Alzheimer’s or other dementias as older Whites.
Dementia is hard to prevent, because what causes it often is not known. But people who have dementia caused by stroke may be able to prevent future declines by lowering their risk of heart disease and stroke. Even if you don’t have these known risks, your overall health can benefit from these strategies:
- Don’t smoke or abuse drugs or alcohol.
- Stay at a healthy weight.
- Get plenty of exercise.
- Eat healthy food.
- Manage health problems including diabetes, high blood pressure, and high cholesterol.
- Stay mentally alert by learning new hobbies, reading, or solving crossword puzzles.
- Stay involved socially. Attend community activities, church, or support groups.
- If your doctor recommends it, take aspirin
Medicines may slow down dementia, but they don’t cure it. They may help improve mental function, mood, or behavior.
Palliative care
Palliative care is a kind of care for people who have a serious illness. It’s different from care to cure the illness. Its goal is to improve a person’s quality of life—not just in body but also in mind and spirit.
Care may include:
- Tips to help the person be independent and manage daily life as long as possible.
- Medicine. While medicines can’t cure dementia, they may help improve mental function, mood, or behavior.
- Support and counseling. A diagnosis of dementia can create feelings of anger, fear, and anxiety. A person in the early stage of the illness should seek emotional support from family, friends, and perhaps a counselor experienced in working with people who have dementia
Preparation and Management
- Education: Educate yourself and family members about dementia. Understanding the disease can reduce fear and anxiety and help in planning effective care strategies.
- Healthcare Planning: Work with healthcare professionals to develop a comprehensive care plan. This may include medication management, routine medical check-ups, and therapeutic interventions.
- Legal and Financial Planning: Early planning for legal and financial matters is crucial. This can include setting up power of attorney, wills, and discussing long-term care options.
- Home Safety: Make the living environment safe and comfortable. This can involve removing tripping hazards, installing locks, and ensuring adequate lighting.
- Support Networks: Building a support network is essential. This can include family, friends, healthcare professionals, and support groups. Respite care and professional caregivers can also provide valuable assistance.
- Self-Care for Caregivers: Caregivers should prioritize their own well-being. Regular breaks, support groups, and counseling can help manage the emotional and physical toll of caregiving.
It can be difficult to talk about dementia with a friend or family member, especially when you have to talk about legal and financial issues. Dementia Conversations: Driving, Doctor Visits, Legal & Financial Planning, a free online course, prepares you to have these tough conversations.
Our Family’s Dementia Experience
As we got older, I and wife Edith have been involved dealing with family members with this illness. Just recently, we had to deal with a family member and her husband who progressed to advance dementia and could not manage living on their own.
First, we notice they stopped taking trips. They lived two hours’ drive away from us and stopped visiting us. As a couple, they had a wide circle of friends and were active in church and they gradually just withdraw from all activities and contacts. We later noted that when we visit them, they had all their window blinds always closed the glass opening in their door covered. Their mental condition just gradually deteriorated.
It got to where we had to hire someone to take care of them and a member of the family to handle their finances and help take care of their home. They both stated they did not want to stay in a nursing home. Finally, their mental and physical state were such that they needed 24/7 assisted care.
So my wife suggest for them to move to the Philippines, where we have an apartment for them to stay, and they could have 24/7 assisted nursing and domestic assisted care. To transport them to there, my wife, her brother and his wife accompanied and assisted them in their travel to the islands.
My wife said the travel was very difficult, and stressful because it was like dealing with two toddlers in adult bodies. They needed help for their toilet needs, help in feeding them, and to occupy their attention so as not to bother other passengers. At one point, the husband threw food at some passengers, because he got paranoid that they were after him. The travel took almost 20 hours. My wife said, she had to be awake the entire trip because of the unpredictable behavior of the couple.
Lately, I run into a friend at a party. She told me his older brother had multi-infract dementia (multiple mini-strokes), and just passed away after 5 years from the time of diagnosis. He wanted to go back to the Philippines so he could get round the clock assisted care. His children, who were all in the United States, wanted him not to do it because it would be too far for them to visit him regularly. They admitted him to Alzheimer’s facility, which cost $7,500.00 per month for the last three years of his life.
Our first hand experiences highlights the profound challenges and emotional complexities involved in caring for family members with advanced dementia. The gradual withdrawal from social activities, the deterioration in mental and physical health, and the eventual need for constant care are common and heart-wrenching aspects of the disease. Our decision to move our relatives to the Philippines for more affordable and accessible 24/7 care underscores the difficult choices families often face.
The story of my friend’s brother further illustrates the high costs and emotional toll of dementia care. These experiences can be incredibly isolating and stressful for caregivers, underscoring the importance of support networks and resources for those affected by dementia.
Hope for the Future
Ongoing research is crucial in the search for effective treatments for dementia. Advances in understanding the genetic, molecular, and environmental factors involved are paving the way for potential breakthroughs in treatment and prevention.
“With something like cancer, there is a feeling that you can fight it in some way or control your response to it, but with dementia there is the fear of losing control of your mind and your life.” Kevin Whately
