Caring for Someone with Dementia: 5 Important Tips
Dealing with dementia of a loved one is a hardship that’s difficult to be prepared for. After all, nobody plans their life thinking that one day they’ll have to be a caregiver of a family member, or worse still, become a burden due to their own health problems.
The fact of the matter is that most of us at some point will be affected by age-related illnesses like dementia, either directly or indirectly. According to The World Health Organization (WHO), around 50 million people across the globe are currently suffering from dementia. What’s more, it’s a growing problem. Each year the number of cases increases by 10 million people as a result of increasingly stressful, modern lifestyles. By 2030, the total number of people with dementia is projected to reach 82 million.
In the U.S, Alzheimer’s disease, one of the leading causes of dementia, is the sixth-leading cause of death, as reported by the Centers for Disease Control and Prevention. Mostly occurring in older adults over 60, the estimated proportion of those with dementia at a given time is between 5-8%. With an aging population overall, the number of people dealing with dementia will increase, and therefore, it is important to understand how to recognize the various types and symptoms and plan for the future.
Symptoms and Types of Dementia
There is often some confusion about the relationship between dementia and Alzheimer’s disease. While they are intrinsically linked, the distinction is that dementia describes a group of symptoms that affect memory and cognitive abilities, whereas Alzheimer’s disease presents just one of the causes. There are also several other diseases that cause dementia, such as Parkinson’s or Huntington’s disease.
Symptoms of dementia are characterized as the following:
Loss of memory
Difficulty finding the right words
Getting lost easily
Less ability in maintaining eye contact
Struggling with complex tasks or problem-solving
Disorientation and confusion
Impaired motor function and coordination
Depression, paranoia, and anxiety
Tactless or inappropriate behavior
Hallucinations, seeing people or objects that aren’t there
Dementia is caused by underlying diseases or injuries that affect the brain and damage nerve cells. Depending on the area of the brain affected, dementia can cause different symptoms in different people.
Types of dementias and causes include:
Alzheimer’s disease: The most common cause of dementia, Alzheimer’s disease is brought on by the mutation of several different genes, most notably the apolipoprotein E4 (APOE) gene. It can run through families. In Alzheimer’s disease, plaques and tangles are formed in the brain and cause damage to healthy neurons and fiber.
Vascular dementia: The second most common type of dementia, Vascular dementia damages the brain’s blood vessels and causes various problems due to reduced blood supply, such as strokes. Common symptoms include difficulties thinking, focusing, and problem-solving, which tend to be more pronounced than short-term memory.
Huntington’s disease: This disease is commonly discovered in earlier age adults around 30 or 40. Huntington’s disease is caused by a genetic mutation that makes specific brain cells and the spinal cord waste away. Symptoms are often shown as an acute decline in thinking abilities.
Traumatic brain injury (TBI): This is a condition caused by repetitive head trauma, often present in athletes of contact sports, such as boxers and football players. TBI can bring on dementia symptoms, like loss of memory, depression and slurred speech, and sometimes may appear years after the injury.
Creutzfeldt-Jakob disease: A rare brain disorder, Creutzfeldt-Jakob disease is caused by deposits of infectious proteins called prions, or can come about as a result of exposure to diseased brain tissue during surgery. It can also be inherited.
Parkinson’s disease: While Parkinson’s disease starts out as a movement disorder (where muscles become tight and rigid), patients eventually develop dementia symptoms at a later stage, commonly referred to as Parkinson’s disease dementia.
Frontotemporal dementia: Characterized by a group of diseases that cause the degeneration of nerve cells and their connections in the frontal and temporal lobes of the brain, this type of dementia is closely associated with personality changes, behavior, thinking, and judgment.
Lewy body dementia: A common type of progressive dementia, Lewy body dementia refers to Lewy bodies — abnormal clumps of protein in the brain, often present in Alzheimer’s disease and Parkinson’s disease. Symptoms include visual hallucinations, difficulties with focus and attention, uncoordinated movement, and tremors.
Mixed dementia: As the name suggests, a combination of several underlying causes that show up as dementia symptoms.
5 Important Tips For Caring For Someone With Dementia
Dealing with dementia is never easy. While prevention through lifestyle is one of the first things we think of, there are also genetic factors to take into consideration. Most times, a diagnosis takes us by surprise, so here are 5 important tips to consider if you find yourself caring for someone with dementia:
Tip One: Plan Ahead
The early stages of dementia are certainly less challenging than the later stages, but getting in a plan of care as soon as you learn of the diagnosis will help you better prepare for the future. Initially, your loved one may only need support with daily activities, but as the dementia progresses they may eventually need long-term, 24-hour care at a nursing home.
Planning ahead will help your loved one have more autonomy with decision-making, which will certainly prevent conflict with other family members involved in the caregiving. Paying for long-term care can be very expensive, so you’ll want to make sure all options are explored in advance. Although it can be quite traumatic having to talk about the morbid outcomes, it’s in the dementia patient’s and caregiver’s best interests to organize the legal and financials as soon as possible.
Things you’ll need to consider in preparing for dementia care:
Who will take care of all decisions once the dementia patient is unable to?
Who will be the main caregiver, and will there be a schedule for changeovers with other caregivers?
Quality of life: Is it best for the dementia patient to stay at home or move to a specialized healthcare facility?
Tip Two: Learn Communication Techniques
Dealing with dementia behaviors can at times be very frustrating, especially if you’re having to repeat yourself often or navigate difficult and inappropriate conduct. Learning new communication techniques can be a challenge, but ultimately, it will help your caregiving become less stressful and even help to deepen your bond with the person.
Here are just some of the ways you can improve communication:
Convey positive body language. Dementia patients are still able to pick up on mood and will be less anxious if your attitude and body language is pleasant and respectful. Be mindful of facial expressions, your tone of voice, and touch.
Limit distractions for better attention. It can be confusing for the person to listen to you if the TV is turned on, or if there is a lot of activity happening in the room.Quieten the environment before attempting to speak with your loved one, using a combination of nonverbal cues and touch to keep focus.
Speak slowly, simply, clearly, and calmly.It may feel unnatural at first, or condescending, but if you speak slowly, simply, and in a reassuring tone you’ll receive a better response. Avoid raising your voice if you get frustrated. Try rephrasing the sentence, or wait a few minutes and try again. Refrain from using pronouns (he, she, they) or abbreviations.
Ask closed questions. Questions that need a yes or no answers are best. Avoid giving too many choices or asking open-ended questions that’ll confuse.
Be patient. It might take your loved one some time to answer your question. Look for answers in nonverbal cues, such as a particular look that may convey an underlying emotion. You can suggest words sensitively, but if they get frustrated, try to listen and respond with patience.
Break down tasks into manageable steps. This will help your loved one feel more independent. Make sure they know that skipping a step is OK, but gently lead them through completing their task or daily routine.
Change the subject. If either you or your loved one become annoyed or upset because of communication problems, switch up the subject, or try and move to a different room or place. This can help to ease tension and redirect the mind to something else.
Reminisce. Focus on long-term memories, i.e, remembering the past rather than something recent. People with dementia are more likely to retain information from the past. Reminiscing is often received well and can be very comforting, as well as a source of joy.
Laugh! It’s important to keep a sense of humor, though avoid directing jokes at the person’s expense. People with dementia still like to have a laugh and socialize.
Tip Three: Check Your Environment
Coping with difficult behavior of a family member or loved one with dementia is one of the greatest challenges to deal with as a caregiver. Learning to deal with personality changes, aggression, inappropriate comments, wandering around and getting lost, is stressful and burdensome.
Oftentimes, subtle changes to your environment can make all the difference. Difficult behavior is usually brought on by your loved-ones inability to express their needs as they used to. You can improve the general well-being of all by taking notice of the following:
Bedrooms: Try to improve the person’s bedroom design to be simple, accessible, and easily recognizable. The bedroom needs to be a private, comfortable and safe place where they can go to decompress and have a good night’s sleep.
Bathrooms: Remove stress from this area by incorporating walk-in showers or baths, and toilets with handles on either side. Helping a person with dementia to retain as much independence as possible is key to reducing stress, both for themselves and the caregiver.
Lighting: Try to get as much natural daylight as possible and reduce artificial lighting, especially at night time.
Backyards: Backyards offer fresh air, open space, chances to exercise, and lots of sunlight, which is essential for good health. Make sure boundaries are secure as well as outdoor furniture.
Kitchen and dining areas: People with dementia often lose their appetite and capacity to cook for themselves. Try to keep this area as clutter-free and simple to use as possible, with a clear lay-out and attractive colors.
Assistive technology: There are many technological solutions to help people with dementia, ranging from stair lifts to large button telephones. Adding some of these devices to your household will help your loved one maintain independence for longer.
Avoid overstimulation and noise: People with dementia are often distressed by noises that may not seem to be a problem for others, so be wary of accidentally raising your tone of voice, or listening to the radio/TV too loudly. Try including noise absorbing materials in your decor, e.g, heavier curtains, carpets instead of exposed flooring, or change furniture that’s overly creaky.
Tip Four: Manage Your Expectations
Accepting what is happening to a family member or loved one is one of the most heart-breaking challenges of dealing with dementia. Each new stage of the disease calls for an adjustment of expectations and coming to terms with a new reality.
Coping with emotional loss and grief while your loved one is still alive can be hard to bear. By taking the time to reflect on events and accept the new way of life, you can work towards managing your expectations better and being more present as a caregiver.
Keep a daily journal to list your daily gratitudes to help you count your blessings and celebrate what your loved one can still do, rather than what they cannot. With this in mind, try to organize activities you can both participate in and enjoy.
Even the most mindful and emotionally-aware caregiver can be tremendously challenged by the responsibilities involved with caring for someone with dementia, so remember to give yourself grace on a daily basis.
Tip Five: Get Help
With so many of us conditioned to try coping on our own, it is unrealistic to take on the enormous responsibility of taking care of someone with dementia without factoring in some sort of assistance or help along the way. After all, everyone has their own physical and emotional needs to deal with, and cannot pour from an empty cup.
The first step is to seek out help in local support groups, charities, or volunteer organizations. Widening your support network can be immensely helpful for sharing experiences with others going through the same. Making connections in the care provider community can help you feel less alone and isolated.
Reach out to other family members. It can be uneasy asking for help, but many won’t explicility come forward unless they are asked. It’s important to not feel any shame for asking to share the burden of daily mundane tasks, such as shopping or cleaning. Make sure you schedule breaks as often as you can and fill up your free time with activities that bring you joy, or rest. Family caregivers that take time for themselves are often better at caring and also find more peace in the situation.
Take part in workshops. Nobody is born knowing all the ins and outs of caregiving. Take advantage of various caregiving workshops in your neighbourhood, or use online resources to help you stay up-to-date on what’s working best.
Don’t abandon yourself. It’s tempting to want to give your all to your loved one, but sometimes this can be counterproductive and cause you to have health issues on top of stress. Make sure you carry on scheduling medical appointments and checkups for yourself, as well as make time for self-care activities like exercise, socializing, and relaxation. You may even want to take up a new relaxtion hobby, such as yoga or breathing meditations.
Find someone to talk to. Other than your support group, confide in a trusted friend, religious leader, or therapist about your troubles. It’s important to have your feelings heard and validated to be able to get rid of stress.
Research in-home help. Some caregivers may not have the luxury of having supportive family members to assist them. Arranging a regular, or as needed, home assistance from professional care providers to help with basic, and/or complex tasks will certainly make life easier for everyone.
Adult day care. Adult day care services can offer your loved one a wide variety of activities and opportunities to socialize with others living with dementia, giving you some time to yourself to do other things or tend to other needs.
Respite care. Extending from adult day care services, there are also other services you can use for respite, allowing you time to rest from caregiving. Volunteers, nursing homes, or paid in-home help services may have respite programs that provide hot meals, watching over, or running errands whenever you need a break.
How to Help Dementia Caregivers
If you find yourself on the other side of the fence as an observer, never underestimate the simplest offer of help for dementia caregivers. Quite often, it’s a good idea to not wait to be asked for help, but offer it in passing, for e.g, call to see if they need anything while you are out grocery shopping. Doing this regularly can help to reinforce your presence as someone the caregiver can learn to rely on and trust. Offer your help for even the most mundane tasks, such as coming over to make a cup of tea and be with the patient while the caregiver tends to something else. You can also tell them about Care As One, so they know they can hire qualified help if need be.
Creating space for the caregiver to recharge their batteries is the best gift you can give them as a friend, allowing them to take care of their loved one as they want to. Even if you can’t be there for them physically, let them know you are thinking of them with phone calls, texts, or emails, keeping the line of communication open. This way, you will be able to recognize any worrying signs of burnout and encourage the caregiver to take time for their own well-being.