Dementia Care: A Caregivers Guide

Dementia care is a common reason many adults end up in caregiving roles. While it is not a specific disease, dementia refers to cognitive decline associated with certain degenerative brain conditions. Alzheimer’s disease is the most common form of dementia, but there are several other ways the condition can develop. As a caregiver, you know this disease can cause confusion and stress for the sufferer and the people in their lives. It is crucial to ensure you have the information and support you need to prepare for the journey ahead. 

Dementia caregivers can experience burnout, stress, and emotional difficulties, but luckily, there are plenty of ways to minimize these effects. Staying informed on the condition, building a toolkit for managing dementia care, and taking care of yourself are a few of the best ways to maximize the quality of life for both you and your loved one.

Below you will find more information about dementia in the elderly and our recommended strategies for managing your daily routines as a caregiver. While dementia care can take an immense toll on many areas of your life, please remember that you are not alone. You deserve support, too. Read on to find the information you need to improve your caregiver experience.

An Overview of Dementia in the Elderly

Dementia is commonly associated with aging, as most people with the condition are 65 or older. Statistics show the percentage of people with Alzheimer’s dementia increases with age, but it is not a normal part of the aging process. Three percent of people aged 65-74 have the condition, while the number jumps to 17 percent in people aged 75-84, and 32 percent in people 85 or older. Here are some other facts to know about this illness.

• Dementia is a degenerative brain condition that progressively disrupts abilities to think, remember, communicate, and carry out normal daily activities and behaviors.
• Around 5.8 million Americans aged 65 or older have Alzheimer’s dementia. Eighty percent of those sufferers are 75 or older.
• An estimated 50 million people around the world have dementia.
• Dementia is one of the main reasons older adults become dependent on a caregiver.
• There is no treatment to cure or alleviate neurodegenerative forms of dementia.

Risk Factors and Forms of Dementia

Dementia is a general term for diseases that cause progressive memory loss and cognitive impairment. Age is the most common risk associated with these diseases, but a few other factors are genetics, family history, cardiovascular disease, education and cognitive achievement, and traumatic brain injury. Here are the most common conditions associated with dementia.

• Alzheimer’s disease, which makes up between 60 and 80 percent of cases
• Mixed pathologies, defined when more than one brain change associated with dementia is present
• Lewy body disease
• Cerebrovascular disease
• Fronto-temporal lobar degeneration
• Parkinson’s disease

Signs and Symptoms of Dementia

You have likely noticed certain symptoms in your loved one, even if they are in the early stages of dementia. Here are a few of the signs to look out for as the disease progresses.

• In the early stage of dementia, you may notice your loved one is often forgetful, gets lost easily, and misplaces things, and loses track of when or where they are.
• In the middle stage of dementia, you can expect your loved one to forget names, faces, and recent events. They may become lost in familiar environments, find it difficult to communicate, and need help with basic tasks. Your loved one may repeat themselves and behave in atypical ways.
• In the late stage of dementia, your loved one will be almost entirely dependent on you in every stage of their daily routines. They will be completely unaware of when and where they are. They will find it difficult to walk and may experience extreme behavior changes.

These changes can be challenging to process for a caregiver, but you must remember to take care of yourself. Read on to learn the best ways to manage the caregiving journey to help your loved one, and yourself, achieve a better quality of life during this unpredictable season. 

Caring for Yourself While Managing Dementia Care

Caregiving for a loved one suffering from this disease can cause financial, physical, and mental pressure on a good day, and may feel completely impossible on a difficult day. You have sacrificed so much for your loved one, and it may feel like a thankless role. 

However, you are improving your loved one’s life immensely just by being there each day. It is important to remember that you deserve to make things easier on yourself wherever possible. Here are a few of the symptoms you may experience at some point in your caregiving journey.

• Mental health issues like anxiety and depression
• Burnout and exhaustion
• Sleep disturbances
• Grief and loneliness
• Heightened stress levels
• Emotional overload
• Increased muscle tension
• Financial strain

Caregiving Tips for Dementia Care

Knowing the challenges of caregiving does not mean you will be able to prevent them. However, there are some ways you can improve your caregiving experience to minimize the negative effects.

Develop a Structured, Yet Achievable Routine

As your family member’s condition evolves, they may become less mobile or able to carry out basic tasks. This is an upsetting process for both of you, but you can reduce frustration by establishing a clear routine. 

Come up with a daily schedule to stick to each day, incorporating your loved one’s needs, abilities, and preferences. This may seem overwhelming at first, but once you get used to the routine, it can create a sense of familiarity that is comforting to both of you. Here are a few components to include when developing your routine.

• A predictable morning routine: Wake up at the same time each day and prepare for the day together. Eat breakfast and engage in conversation. Incorporate one engaging activity like reading together or making something with your hands. Add in a light physical activity like a walk around the neighborhood.
• A structured afternoon routine: Eat lunch together and take time to catch up on household chores. Engage in one of your loved one’s old favorite activities like gardening or doing puzzles in the newspaper. Let your loved one have some quiet time and use it as a chance to do something kind for yourself.
• A reassuring nighttime routine: Nighttime sometimes brings anxiety with it, but a nice routine can help. Eat dinner together and discuss any lighthearted topics that come to mind. Catch up on chores and spend some time doing a relaxing activity like watching television or playing a game. Prepare for sleep by bathing and reading in bed. 

Create a safe and supportive environment

Another component that can provide a bit of ease is to adjust the environment to work best for you and your loved one. Here are a few ways you can improve the environment to alleviate frustration.

• Remove rugs and other items that may be tripping hazards.
• Organize your loved one’s favorite items so they can reach them easily. Clothes, books, crafts, and other go-to items are more comforting when they are accessible.
• Provide tools to help your loved one. For example, if they need help reaching items on the floor, you can purchase a hand-held grabbing tool.
• If possible, you may want to install items like a bath chair, support railing, automatic sink, or automatic lights if your loved one cannot remember how to use them.

Adjust your expectations

Your relationship with your loved one has changed, but that doesn’t mean you can’t work together. If possible, ask your loved one how they would like to spend their days. Get them involved with household chores and let them make some basic decisions. Learn to collaborate where you can to arrive at a new normal that works for both of you. Maybe you need to sponge bathe rather than showering every other night. Perhaps your chore schedule could be more relaxed. Make the daily moments doable for you to alleviate strain wherever possible.

Practice reaching out

As you get further into your caregiving role, you may notice people have stopped reaching out as often. This can feel isolating, but it is likely not because your loved ones have stopped caring. They may not want to overwhelm you, or they may not know how to help. Reaching out to others is a great way to maintain connections despite your situation’s difficulties, and those who love you will be happy to offer support.

Take Care of Yourself

Studies show that dementia care caregivers experience a heavier stress load than other caregivers, often devoting more than 40 hours a week to the role. You may feel that this road is yours to walk alone, but taking care of yourself and seeking support are crucial for improving your experience as a caregiver.

Taking care of yourself is one of the most important aspects of caregiving, yet it is often overlooked. Of the estimated 10 million dementia care caregivers, around two-thirds suffer from sleep disturbances associated with physical or mental health issues or living with the dementia patient in their home. There are many repercussions to neglecting your own wellbeing, so practice showing up for yourself whenever you can. Here are some ways you can work to care for yourself.

• Prepare tools for yourself like a pre-packed overnight bag, emergency phone number list, organized medicine container, and printed daily schedule to make your life easier.
• Practice accepting help. Cooking, cleaning, maintenance work, yard work, financial planning, caregiving, and more are too much for one person to handle alone. You may not want to burden others, but having a support system is crucial for improving your daily life.
• Take time each day for you. Observe when your loved one takes a nap or has quiet time, and use that time for yourself. Call an old friend, exercise, or make your favorite hot drink. These moments to yourself will make a world of difference.
• Read a book on caregiving. These books can help you manage caregiving. Reading books on dementia care can help you alleviate stress and care for your loved on better.

Sources:

• www.who.int, World Health Organization, World Health Organization
• www.cdc.gov, Center for Disease Control and Prevention, Center for Disease Control and Prevention
• www.alzheimer.ca, Alzheimer Society, Alzheimer Society
• www.ncbi.nlm.nih.gov/pmc/articles/PMC3181916/, Family caregivers of people with dementia, National Center for Biotechnology Information
• www.ncbi.nlm.nih.gov/pmc/articles/PMC1861844/, Sleep disturbances in caregivers of persons with dementia: Contributing factors and treatment implications, National Center for Biotechnology Information
• www.alz.org/media/documents/alzheimers-facts-and-figures-2019-r.pdf, Alzheimer’s Disease Facts and Figures, Alzheimer’s Association