Alzheimer's and dementia care: Tips for caregivers

The terms Alzheimer's and dementia are sometimes used interchangeably. However, dementia is an umbrella term for various degenerative brain conditions, such as Alzheimer’s, which is a form of dementia. However, not all people with dementia have Alzheimer’s. Despite this difference, caregivers of those living with Alzheimer’s and other forms of dementia often experience similar struggles. 

If you’re a caregiver of someone with dementia and struggling with your caring duties, you’re not alone. Caregiving can put individuals at high risk of burnout, mental illness, and other mental health challenges. It may be helpful to explore resources available to you and tips for caring for yourself outside of your work.

Tips for caregivers of those with Alzheimer’s and dementia 

Various organizations and doctors continue to study and publish statistics about Alzheimer's disease and dementia. According to the Alzheimer's Association, this condition is a leading cause of death and disability for older people in the US. About one in nine Americans over 65 has the disease, and a person's risk can increase with age. 

Alzheimer's and dementia can profoundly impact the lives of the individuals experiencing them and those who care for them. For example, Alzheimer's and related dementia care can be financially taxing. As the disease progresses through its different stages, long-term care and more intensive medical intervention are often required.  

However, one of the most dramatic impacts of caring for a person with Alzheimer's or another dementia-related disease may lie in the mental and emotional toll it can take. Without the knowledge and support required, it can be overwhelming. Below are tips for caregivers on providing the best care for a loved one with Alzheimer's or dementia and caring for themselves.  

Plan ahead, but stay flexible

Routine and familiarity may be helpful for caregivers and could help their loved ones be more comfortable. Routine can reduce stress levels from memory loss. Work together to create a daily schedule around tasks like taking medications, grooming and personal hygiene, mealtimes, and activities. Create a calendar containing a daily schedule, as well as scheduled phone calls, doctor's visits, and appointments. You can post this schedule somewhere prominent for the individual to view. 

Everyday tasks may become more complex and take longer for your loved one to complete as the disease progresses. To reduce frustration, leave room on the calendar to accommodate the extra time your loved one may request to be self-reliant. You might also schedule moments to remind them of tasks. 

Encourage self-sufficiency

In addition to involving a person with dementia in creating a daily schedule, you can support your loved one's ability to complete tasks and make decisions for themselves. For example, if appropriate, give them the freedom to choose their clothing for the day or which recreational activities they'd like to try. 

Note that too many choices can be overwhelming for someone with dementia, so limiting them to just a few choices every day may be healthiest. To encourage them to dress independently, purchase clothing that is easy to put on and remove. Avoid complicated features like buckles, small buttons, and shoelaces, and choose pants or skirts with an elastic waistband and pullover tops.

As Alzheimer's and dementia progresses, it often compromises the individual's problem-solving skills. When assisting your loved one in chores and other tasks, give clear instructions to limit frustration.

Get their practical affairs in order

Keep lists of your loved ones' practical affairs and make them as detailed as possible. Obtain thorough information on their doctors, insurance plans, credit card information, mortgage, and bills. Educate yourself on the minutiae of their finances. If stability is a concern, resources may be available to help seniors with their finances, including mortgage help, life insurance policies, pension and savings plans, etc. 

It may be valuable to try to have difficult conversations about emotionally charged issues like DNR and funeral wishes before they become a crisis. Such matters may be easier to resolve if you address them upfront or if your loved one has a living will in place before their condition progresses. 

Prioritize home safety

Preventing accidents is often one of the most critical points of caring for someone with Alzheimer's and dementia. Below are a few tips for keeping your home or caregiving environment safe: 

• Prevent falls by installing handrails in areas that may be difficult to navigate, such as stairways and the bathroom. 
• Avoid clutter, area rugs, loose electrical cords, and other items that create a fall hazard. 
• Ensure all smoke and carbon monoxide detectors function and keep a fire extinguisher in an easy-to-access location. 
• Remove lighters and matches or store them in a locked drawer or cabinet. 
• Keep items like cleaning supplies, medications, weapons, tools, dangerous kitchen utensils, and alcohol locked in a drawer or cabinet.
• Keep the hot-water heater set to a safe temperature to avoid burns. 
• Supervise cooking activities that involve the stove or oven. 
• Consider a life alert button or another way for your loved one to call for emergency help if you are not there to support them. 

Seek support

Resources exist for caregivers of people with Alzheimer's and other dementia-related diseases. Consider seeking local community outreach organizations for seniors and those who care for them. A Google search in your area may help you get started. You can also ask community centers for information about everyday practical topics. For example, you might ask which businesses offer senior discounts or ask for advice on where to find a senior-friendly salon or barbershop.

If your loved one belongs to a local church or place of worship, consider reaching out. Some churches, synagogues, and other places of worship set up visits, food delivery, and financial assistance for their members. Don't be afraid to ask for help and see if there are ways you can get your loved one involved in the church, as well. Spirituality or religion may keep your loved one engaged in the community and stay socially connected. If they cannot get to a place of worship, reach out to a spiritual leader and ask if they'll make in-home visits for prayer.

Look to your doctors and healthcare providers for resources. Often, medical professionals specializing in treating dementia have access to an extensive list of organizations that support dementia patients and their caregivers. Cultivate a strong network of people who can help you emotionally, mentally, and physically as you support your loved one.

Educate yourself

Look to accredited, reputable sources for education about Alzheimer's and dementia. Your doctor may be an excellent resource for information, and The National Institute On Aging has an extensive online library of articles about how to care for your loved one and the most up-to-date information about treatments. 

Practice self-care 

Self-care can be crucial for caregivers. Self-care may include staying mindful of your stress levels and taking a break when frustration becomes overwhelming. It may be challenging to ask for help, but try to have a list of friends and loved ones who can step in, even if it means being present with you for a moment.    

Eat well, exercise, and get at least seven hours of sleep. If sleep isn’t possible every night, consider taking turns with someone else. Try to take time out to do activities you like to do, particularly social ones. See if friends or family can meet up with you once a week for a game of tennis or cards. Schedule regular dinners with friends or go to the movies. Whatever your interests are, maintaining that social contact by doing an activity you enjoy may help you care for yourself healthily. 

It may be helpful to pay attention to your spiritual self. Meditate, go to church, hike, and commune with nature—all are ways to be present with your feelings. In addition, it may help to speak to someone about what you’re going through. Expressing your frustrations can be therapeutic, particularly if you have someone to actively listen to you. If you aren’t comfortable confiding in a friend or loved one, find a therapist with experience helping caregivers in your unique situation. 

Alternative support options 

Being a caregiver for a loved one with a memory disorder like Alzheimer's or dementia can be extremely challenging, but it can be rewarding as well. While the disease's progression and severity may vary depending on its different stages, the common denominator for many caregivers is to pay attention to their needs and those of their loved ones. 

Although therapy is an impactful way to care for yourself, those caring for a loved one may find it challenging to speak to a therapist because their schedule is often full, and free time is at a premium. Some people have difficulty commuting to and from appointments or don't think they can afford it. In such cases, online therapy may be a practical solution.  

Platforms like BetterHelp can be a beneficial option for connecting caregivers with licensed, experienced therapists. You can speak with an online counselor from the comfort of your home on a schedule that works for you via phone, text, online chat, and video chat. Online therapy is often more affordable than conventional therapy without insurance, and a growing body of research indicates it can be as effective. 

For example, a randomized controlled pilot trial measuring the effectiveness of internet-based cognitive behavioral therapy (iCBT) among 64 informal caregivers found it to be "effective in reducing caregiver burden, anxiety, depression, stress, and improving quality of life."