This is the second of a two-part series on dementia and cognitive decline. Read Part One here >
No one can weather the storm of dementia alone. The disease demands more help from others as it progresses. There is always at least one close friend or family member – usually a spouse – who takes the helm in this respect. If you are reading this article because someone you love has dementia, you might soon take on this daunting role. Fortunately, there are resources available for people with dementia and their primary caretakers that can help ease the process.
The main caregivers play a crucial role at every stage. They are frequently the first to recognize subtle signs early on and push for a visit to the doctor. For someone experiencing memory issues, it’s harder to ignore them when people around you voice their concerns.
When a person receives a dementia diagnosis, the main caregivers help process the news. Someone who has just discovered they have dementia may feel sad, lonely, and hopeless about the future. The value of grieving in the company of a partner cannot be understated. Talking about the situation is a critical emotional task because it fights the urge to deny reality. This tough first step of accepting the circumstances sets the stage for how individuals and their families will manage the disease over time.
When a person receives a dementia diagnosis, the main caregivers help process the news. Someone who has just discovered they have dementia may feel sad, lonely, and hopeless… The value of grieving in the company of a partner cannot be understated… This tough first step of accepting the circumstances sets the stage for how individuals and their families will manage the disease over time.
Connect with outside support groups early on. The National Alliance for Caregiving, the Alzheimer’s Foundation of America, and the Alzheimer’s Association are good places to start for information on general caregiving and caregiving specific to dementia. These organizations provide links to classes and support groups that will help ease the transition into living with and taking care of someone with dementia. Support groups offer people with dementia the chance to bond with others dealing with the same kinds of things. They provide a source of emotional camaraderie at a time when people frequently feel isolated.
Supporting a family member throughout the stages of dementia is emotionally and physically taxing… Keep in mind that helping a family member or friend in sickness is one of the most selfless acts a person can perform. If you take on this role, you must never forget to take care of yourself too. Know that your gifts of time and caring are priceless and represent the ultimate expression of love and humanity.
The Early Stage
During the first few years of the disease, people with dementia are still largely independent. They can dress, feed, and bathe themselves. They drive, go to work, and attend social gatherings. The most common difficulties early on involve staying organized, managing finances, and remembering tasks and appointments.
The most important thing a caregiver can do during this time is to give the right amount of help. The term “dementia” carries a stigma that people are helpless. As a result, well-meaning caregivers initially tend to do too much for them. Instead, they should strive to promote as much independence as possible throughout the illness.
It helps to focus on doing activities with the person with dementia rather than for them.
As with so many things, the key is communication. Offer help when the person is stuck on a task and becoming frustrated. Look for ways that relieve a bit of the burden, giving just enough assistance for them to complete a task. This might include creating helpful tools together (for example, making lists and using calendars) to help the affected person deal with the symptoms of dementia.
The caregiver will also help with money and medication management, both of which become challenging early on.
People with dementia and their partners should strive to create daily schedules that include exercise and a healthy diet. Twenty to thirty minutes of mild to moderate exercise a day is a good goal. Walking is perhaps the most accessible form of exercise and provides an excellent addition to the routine. Seated exercises are a nice alternative for people who have difficulty walking and can be especially helpful in more advanced dementia.
Eating well is also crucial. Fruits, vegetables, whole grains, and low-fat protein sources form the centerpiece of an ideal diet, while sugary and high-fat foods lead to weight gain. A lack of fiber can cause constipation. People with dementia may need a bit of coaxing to eat sometimes because they forget to eat. Others may forget they have eaten already and subsequently overeat. Care partners need to monitor for signs of both.
As dementia progresses, the affected individual’s partner will have to take on a larger role in preparing meals, and meal delivery services can help ease this burden. Additionally, foods that can be eaten by hand instead of with utensils will be easier to handle and help people retain independence when feeding themselves. Finally, drinking at least six glasses of water a day is crucial as dehydration can exacerbate dementia symptoms.
The middle stage of dementia is usually the longest and lasts for many years. During this time, people lose many of the abilities that once gave them independence. They will need much more help dressing, bathing, going to the bathroom, and feeding themselves. Caregivers should still give them every chance to maximize their independence by giving basic, easy-to-follow instructions in a patient manner. They can lay out the person’s clothes and show them the order for dressing. Demonstration helps too (for example, brush your teeth or wash your faces alongside each other.
People in the middle stage of dementia will frequently become disoriented and confused. Two common experiences are sundowning and wandering. Sundowning occurs in the evening when people can become agitated when they would typically get ready for bed. Dementia disrupts the body’s internal clock and makes it harder to get to sleep. Excessive mid-day napping and late-day caffeine make this worse. Exercise and sunlight during the day help, but stimulation at night should be kept low.
Wandering can happen either with sundowning or on its own during the day. When left alone, people may walk outside and get lost. When they don’t recognize their surroundings, they feel stressed and try to leave. On the other hand, they might just be trying to find the bathroom or kitchen.
In these times, people benefit from reassurance that they are home in a safe place. They might need help getting something they want or need or an activity if they feel restless. Caregivers can create obstacles to prevent them from leaving, such as simple locks or door alarms. However, these should only be used as a last resort and in addition to extra attention and care.
This time can feel like an emotional roller coaster. As dementia progresses, people become prone to aggression, paranoia (suspiciousness), delusions (false beliefs), and hallucinations (hearing or seeing things that are not real). Viewing disturbing content on television may cause this, as can being in unfamiliar or crowded places. Difficulty communicating their hunger, thirst, or pain are other likely culprits. Caregivers should focus on removing triggers and creating a calming environment.
Sympathize with them while also trying to address whatever is bothering them.
Don’t Go It Alone
This is the time when having a family member with dementia starts to become overwhelmingly stressful. When people need this level of extra help every day, it’s a lot for just one other person to take. The primary caregiver(s) will likely need help from friends, family members, or home health aides. Adult daycare services are helpful as they provide relief for the primary caregiver(s) and offer a source of socialization and entertainment for the individual with dementia.
While busy taking care of someone else, caregivers often neglect themselves. Caregivers must pay attention to their own needs too. They must be sure to eat right, sleep well, and get enough exercise. Although this is one of the most challenging times, self-care is a critical step in caring for others.
In the final years of dementia, people need help with every aspect of daily life and are entirely dependent on others. Unable to walk, they are confined to chairs and beds. They can no longer feed, dress, toilet, or bathe themselves at all. Their memory loss is very severe by now, and they struggle to recognize people they have known for most of their lives.
Caregivers must monitor all the individual’s needs at this point closely. They will have to encourage the person to eat and remind them to chew and swallow. Foods have to be soft and liquids thickened to reduce the risk of choking and deadly pneumonia. People will need a similar level of attention for toileting as well. Caregivers keep track of the person’s bowel movements and look out for constipation. They also have to check for bed sores, which, if infected, can become life-threatening.
This level of care quickly becomes too much for one person to provide. To remain at home requires multiple caregivers and a lot of resources. Most families ultimately bring their affected loved ones to specialized nursing homes equipped to provide the level of 24/7 care that the person needs.
This transition out of the home and into a care facility is emotionally hard on everyone. Families may feel as if they are “giving up.” Still, at the end stages of dementia, the best place for people is often a special-care facility. Family and friends can then focus on spending time with their loved one while professionals handle the rest. Quality care allows people with dementia to spend their remaining time in comfort and dignity.
Supporting a family member throughout the stages of dementia is emotionally and physically taxing. Not to mention the unspeakable loss that, for this disease comes in stages and ends with the family member passing away. Keep in mind that helping a family member or friend in sickness is one of the most selfless acts a person can perform. If you take on this role, you must never forget to take care of yourself too. Know that your gifts of time and caring are priceless and represent the ultimate expression of love and humanity.