Understanding dementia, Alzheimer’s disease and how to provide proper care

Forgetfulness and mild changes in memory may be common signs of aging. For example, we might occasionally misplace car keys, forget to pay a bill or struggle to find a word. Such small memory lapses are considered common. But ongoing problems with communication, memory and attention could be signs of a more serious issue called dementia.

It’s important to understand the difference between dementia and Alzheimer’s, and how to provide care for your parent if they are diagnosed with this disease.

What is the difference between dementia and Alzheimer’s disease?

Dementia is not a disease, but a broad term that refers to various conditions of more serious cognitive impairment. It is caused by damage to brain cells which can affect thinking, behavior and feelings.

There are many types of dementia including Lewy body dementia, mixed dementia, vascular dementia, frontotemporal dementia and more.  Alzheimer’s is the most common form of dementia – accounting for 60–80% of dementia cases.

What we know about Alzheimer’s

Alzheimer’s disease is one of the most prevalent health concerns among adults ages 65 and older and is the sixth-leading cause of death in the United States. It is a degenerative disease resulting from brain cell damage where dementia symptoms gradually worsen over time.

Scientists are working hard to identify what causes this damage. They do know that, as this damage spreads, the brain cells lose their ability to function and then die. This causes irreversible changes in the brain that leads to memory failure, personality changes and problems carrying out daily activities.

A person with Alzheimer’s lives four to eight years on average after diagnosis, but depending on other factors, can live as long as 20 years.

Although scientists do not yet fully understand what causes the disease, it is currently believed that there is not a single cause but rather several factors that lead to Alzheimer’s.

  • Age is the most common risk factor.
  • Genetics – your family history may contribute to developing
  • Alzheimer’s, but a healthy lifestyle may reduce that risk.
  • Education, diet and environment are being studied for their possible influence on developing Alzheimer’s.
  • The same healthy behaviors that help prevent cancer, diabetes and heart disease may also reduce the risk of dementia.

The early warning signs of Alzheimer’s

Alzheimer’s and other types of dementia can affect each person differently, but there are some common symptoms to be mindful of. Trouble remembering new information is an early warning sign, because the disease first affects the part of the brain associated with learning.

As the disease progresses, disorientation, confusion and changes in behavior are commonly experienced, such as:

  • Getting lost in familiar places
  • Forgetting names of close family and friends
  • Confusion dealing with cash or trouble paying bills
  • Difficulty completing routine tasks
  • The inability to retrace steps to find misplaced items
  • Unusual changes in mood, personality or behavior

Exhibiting a few or even all of these signs is not a diagnosis of Alzheimer’s – these could be signs of a vitamin deficiency or a side effect from medication, so seek the counsel of healthcare professionals for an accurate diagnosis. If dementia is identified, they will offer options for treatment, help with enrollment in clinical trials and provide information on care needs.

The early warning signs of Alzheimer’s

How is Alzheimer’s treated?

Unfortunately, there is no cure for neurodegenerative diseases such as Alzheimer’s. Although we have yet to discover how to prevent the disease or reverse its effects, researchers are developing drugs that can slow its progression and ease anxiety-related symptoms. Socialization has also been found to have a profound positive impact.

Medical management can improve quality of life for both those living with the disease and their caregivers. Treatment addresses several areas:

  • Maintaining brain health
  • Managing behavioral issues
  • Slowing symptoms of the disease

In general, physicians may prescribe certain medications that improve cell-to-cell communication networks. As of July 2021, the FDA approved aducanumab (Aduhelm) to treat some cases of Alzheimer’s.

A doctor may also recommend fostering an environment for an Alzheimer’s patient that’s calm, safe and supportive, and an exercise and nutrition regime that promotes overall well-being. (Specific suggestions may vary between providers.)

How to care for someone with Alzheimer’s

Family members are most often responsible for providing care for loved ones diagnosed with Alzheimer’s. This is often a new role for the caregiver, and it’s natural to feel some anxiety over knowing what to expect and how to provide proper care. Along the way, you’ll need the support of others. As the disease progresses, more intensive care is often needed – care that requires ongoing attention which can be very demanding of one’s time and eventually becomes a full-time job. This overview will help you understand what to expect with the different stages of the disease.

Early-stage caregiving

If your parent’s Alzheimer’s is diagnosed in the beginning stage of the disease, they will likely be able to continue doing all the things they did before their diagnosis. This early stage can last for years, during which time it is important to provide companionship, support and plan for the future. It’s also the time to discuss available treatments and clinical trials, and start building a support network of family, friends and neighbors.

At first, it is difficult to know how much assistance is needed, as many people with early-stage dementia are often very independent. Such everyday activities as dressing, bathing, walking and even driving may be well within their abilities. Here are some tips to help find the right balance of caregiving for your parent with early-stage Alzheimer’s:

  • Don’t over-help – Be mindful of how much assistance is truly needed. If your parent can complete a task alone – and there’s no immediate risk of injury – providing only the support or supervision necessary helps them maintain their independence.
  • Make a routine – Fill each day with opportunities for your parent to engage with others and make sure you allow for quality sleep.
  • Relax – Prioritize stress-free tasks and approach stress-inducers differently. If going to the grocery store is a stressor for your parent, ask them to help you with a weekly menu and grocery list, and then add this to your grocery trips or purchase online and have them delivered.
  • Stay positive – Assume your parent can safely handle a task. If they become frustrated, determine the cause before intervening. Focus on the moment rather than dwell on the future.
  • Get physical – Studies show that staying active may play a role in living better with dementia.
  • Eat healthy – Help your parent maintain a balanced diet that favors vegetables and is low in fat.
  • Help signal – Even in this early stage, your parent may need gentle reminders for daily activities such as keeping appointments and managing medications. Agree on a phrase or body cue – like a head nod – to help you know when they welcome your help remembering a place, a word or someone’s name.
  • Talk about it – Ask your parent what they need or if they’re feeling frustrated about something and make a plan to move forward together.
  • You’re in this together – Spend time doing activities together and ask if they feel comfortable with the amount of support you’re able to provide.

While this stage does not typically call for around-the-clock care, you may consider a senior community that offers memory care as it is usually easier for those with Alzheimer’s to adjust to a new environment during this early stage. Waiting to make such a move until the middle-stage of the disease often makes it more challenging for them to understand and feel comfortable in their new surroundings.

Middle-stage caregiving

This phase of Alzheimer’s is usually the longest and requires a greater degree of attention and care. More advanced brain damage makes it more challenging to do everyday tasks including speaking, getting dressed and maintaining personal hygiene. This can understandably lead to frustration and possibly escalate to feelings of anger, so it’s important to be patient and calmly provide support.

To be better prepared to adapt to the ongoing changes in behavior typical with this stage, consider support groups and educational workshops. It also helps to familiarize yourself with the most pressing concerns of this stage:

  • Communication – Repeating questions, stumbling over words, the inability to express thoughts and even reverting to a native language are common at this stage. It helps to address such instances in a calm manner, using a gentle tone and speaking slowly and distinctly. If the changes in communication are sudden or unusual, notify their doctor.
  • Daily care – As dementia progresses, your parent may need more help eating, grooming and dressing. They can understandably become angry or frustrated by their declining independence. Express compassion and encourage them to do as much as they are safely able to do but be at the ready with a helping hand.
  • Engaging activities – Providing routine activities can help subdue agitation and reduce the risk of wandering. These can be simple, everyday activities such as gardening, making a meal together, looking at family photos or going for a walk.
  • Driving – Revoking driving privileges is a sensitive subject as it further chips away at your parent’s independence – but when driving becomes a safety issue, there is no other choice. Try to make the decision together, stating concerns and providing assurance that alternate modes of transportation will be provided. If your parent is resistant, it may be helpful to have their physician be part of this conversation.
  • Wandering – While in the middle stage of this disease, your parent can’t be left alone as they are prone to accidents or wandering off. If your parent is living alone their safety could be jeopardized, so it may be best to have them move in with family, find residential care or consider a senior community that offers memory care.

Late-stage caregiving

Lasting several weeks to several years, this stage of Alzheimer’s usually requires around-the-clock care as needs deepen and become more life-threatening, which might include:

  • Difficulty swallowing and eating
  • Assistance walking until unable to walk
  • Full-time assistance with personal care
  • Assistance with toileting
  • Becoming more susceptible to infections

At this late stage, the focus should be on providing your parent proper care, compassion and participating in simple activities that support quality of life. Despite a person’s deteriorating condition, there are still opportunities to connect, such as:

  • Reading books, playing music and looking at old photos
  • Preparing favorite foods
  • Brushing hair and applying soothing skin lotions
  • Sitting outside to enjoy a sunny day

As care needs become more demanding, you’ll need to consider moving your parent to a facility that specializes in serving the needs of those with advanced Alzheimer’s. This can be the most challenging and stressful time in dealing with the disease, but the decision is about providing the proper care and understanding that outside help may be needed.

Memory care at Atria

At Atria, we believe that despite the difficulties of memory impairment, a person with dementia can continue to live an engaging, joyful, and meaningful life. Our proprietary approach to memory care, Life Guidance®, is a specialized program that promotes the health benefits of physical activity, social connection and individualized care. Learn more about all that Life Guidance® offers and read about some of the signs that it’s time to consider memory care.

Our Guide to Understanding Alzheimer’s vs. Dementia (PDF)

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