Alzheimer’s disease impacts millions of people, and medical treatment options are limited.
Research shows that family involvement can ease symptoms and improve quality of life. Whether you live in the same home or hundreds of miles away, you can get involved and support your loved one.
In the US, there are 5.8 million people with Alzheimer’s Disease or related dementia. The impact of these conditions goes beyond those experiencing symptoms. Loved ones often provide care at great personal expense.
In 2018, there were an estimated 16.2 million unpaid family caregivers of people with Alzheimer's or other dementias. They provided 18.5 billion hours of unpaid care, according to the 2019 Alzheimer's Association Facts & Figures report.
These family caregivers need our support. Dementia is a top public health crisis, and caregivers make invaluable contributions. According to studies, family caregivers forfeit significant wages to provide care. They are also more likely to suffer from health conditions.
Family members and friends can play a vital role. Small acts - from stopping by for a visit to sharing a fond memory - can make a big difference. These acts can provide much-needed support for those with dementia and their caregivers.
There are many stigmas and misunderstandings surrounding dementia. One reason for the confusion - every experience with dementia is unique. The progression and severity of symptoms can vary from person to person.
Even though dementia is different for everyone, many individuals and their care partners face similar challenges. Understanding the realities of dementia can help care teams prepare and adapt.
There is no normal course of action for Alzheimer's or related dementia. Over time, the loss of short-term memory and other thinking skills decline, but the path is not linear.
The unpredictable nature of dementia can make it hard for families to adjust. There can be moments of great clarity, followed by moments of pure confusion. There can be periods of normalcy and contentment. Then, without warning, new symptoms can arise.
For most people, the decline of cognitive abilities is very gradual. On average, people age 65 and over live four to eight years after an Alzheimer's diagnosis.
The loss of memory and other cognitive skills can cause changes in mood and behavior. It is estimated that troubling symptoms affect up to 90% of all people with dementia.
Troubling symptoms include:
Pharmaceutical companies have spent over $5.6 billion on Alzheimer's related research. The results?
There are four FDA-approved medications. These treatment options for dementia have limited effectiveness.
Dementia medications ease symptoms for some, but the impact varies by individuals. For most, medications lose effectiveness over time. There is no evidence to show these solutions are effective beyond 6-12 months of use. Pharmaceutical options can also have adverse side effects, which can complicate their use.
Medication can help individuals and their caregivers cope with symptoms. However, the impact is limited and will likely lose effectiveness over time.
These realities can leave us feeling defeated. That’s to be expected. It’s natural to feel discouraged - or even helpless - when your loved one is struggling with memory loss.
But the truth is - you are not helpless in the fight against dementia. There are steps you can take to help your loved one engage with the world and discover moments of joy.
Listening to and singing music can stimulate the mind and help people relax. Familiar music from a person's youth - between the ages of 15-25 - can be especially impactful.
Personalized music activates a brain region that’s connected to memories and emotions. It is also one of the last areas to be affected by the progression of Alzheimer’s and related dementia.
The connection between music and the mind helps people with dementia engage. It's not uncommon for someone to be mostly non-verbal but able to sing along to their favorite song.
Dementia care experts suggest making music part of a daily routine. Regardless of your loved one's music history, personalized music can help.
How can you help:
Many people with dementia can recall past experiences more easily than recent memories. Revisiting meaningful topics and memories can encourage feelings of pride and comfort.
Care partners can help people living with dementia reflect in a variety of ways.
Memory loss symptoms can make communication stressful for people with dementia. Your loved one may feel uneasy or embarrassed about not being able to remember certain details.
When conversing, you must be thoughtful and patient in your approach. Care partners can focus on meaningful topics from the person's past to make conversation more enjoyable.
Avoid asking specific questions. Instead, be prepared to discuss your own memories of a particular topic. Provide your loved one with opportunities to provide commentary or reflections.
Common topics for reminiscing include:
Reminiscence therapy involves the discussion of past experiences with the aid of tangible prompts such as photographs, household items, music, or video recordings. Research studies show that these activities can help with mood, functional abilities, and caregiver stress.
Popular reminiscing activities include:
Outings and activities can help loved ones with dementia stay connected to cherished memories.
Planning meaningful activities requires careful consideration of the person's past. Focus on experiences that are central to the person's identity or purpose in life.
Even if the person is no longer able to engage in the activity without support, they can benefit from being involved. Examples may include:
The support of family members and friends can make a significant difference in the lives of people with dementia. For many, the love we share with others is definitively connected to our sense of self.
Experiencing moments of love and support can have a lasting impact. Memories of these experiences may be lost, but the feelings of belonging persist.
Your loved one may forget your visit, call, or message within a few minutes, but the feeling that they are loved will provide comfort long after you reach out.
Whether you live close-by or far away, there are steps you can take to help loved ones stay connected.
Visitors can benefit from planning. It is important to consider your loved one’s personality, abilities, and mood.
For those that can visit regularly, explore engagement opportunities. Activities, such as listening to music or reminiscing about past experiences, can enhance visits.
Family members can also connect with loved ones through photographs and messages. This can be especially helpful for those that live afar and are not able to visit.
It is best to communicate through a care partner. You can use email, text messages, or apps to keep in touch.
When sharing photos, focus on quality - not quantity. It is important to add detailed comments and messages for the recipient.
When visits are not possible, your loved one may enjoy connecting through a video phone call. Seeing a familiar face can lift spirits.
Set up a video phone call by coordinating with a care partner in advance. By setting up the call in advance, you can avoid potential complications.
Similar to visits, loved ones can benefit from planning ahead. A few tips to help you get the most out of a call include:
Debby is the team Gerontologist at Generation Connect. She was the primary caregiver for her mother who lived with Alzheimer's from 2012 to 2019.
While caring for her mom, she helped develop Care Team Connect™ - a mobile app for caregivers.