With one person in the world developing dementia every 3 seconds and an estimated 50 million or more people living with the condition globally, dementia is a very real problem.1 Getting the right care is crucial to maintaining a good quality of life for those coping with this problem. To add to it, dementia doesn’t just affect the individual but also those around them. Navigating what can sometimes be a very emotional and difficult path may seem daunting, but there are some ways to make it easier. What follows is a look at how to care for someone with dementia, ways to keep them happier, and for you to cope too.
Dementia Causes Loss Of Cognitive And Behavioral Function
Dementia is the term used to describe the loss of both cognitive and behavioral functions, typically in the elderly. It can impact not just the ability to remember, reason, and think, but also things like problem-solving capability, visual perception, ability to manage one’s own life, and even behavior and personality due to lack of control on emotions. While some amount of nerve loss in the brain is normal as one grows older, if you have dementia this happens at a far greater rate and to a greater extent.2
Know What To Expect: The Changing Needs And Habits Of Someone With Dementia
If someone has dementia, you might at first assume it may only impact their ability to remember things or learn. But this has more far-reaching impact than you’d imagine. As the illness progresses, you may notice changes in these areas:3
- Eating patterns, likes, and dislikes
- Continence or ability to control when they answer nature’s call
- Sleeping habits
While this can be unnerving, it is something that can be managed with awareness, practice, and the right help. What follows are some guidelines and tips that could make the experience of caring for a loved one with dementia a little easier on you and them.
1. Communicate Patiently, Slowly, And Clearly
Use physical touch to help communicate. For instance, if a person with dementia is having a hallucination, a gentle pat from you might draw them back to reality and out of their frightening hallucination.4 Sometimes holding hands, touching, hugging, and praise will get the person to respond when all else fails.
Communication – or more specifically failed communication – can be the crux of problems for many caregivers. We’ve whittled it down to some of the key aspects that you could focus on to make it easy for you and the person with dementia:5
- Be positive, pleasant, and respectful. Demonstrate this to the other person by being affectionate in both your tone of voice and facial expression as well as your body language and touch.
- Cut off distractions before you speak to the person. Ambient noise like a television or street sounds can be quite distracting. Close off the window so they can hear you better, or turn down or turn off the television.
- Address the person by name so you have their attention before you talk.
- Speak slowly and clearly so you are easily understood. You should sound reassuring and soothing to the other person. Avoid raising your voice or getting frustrated, this will only cause the communication to break down.
- Simplify your questions. Frame questions so that they have simple yes or no answers.
- Look for nonverbal communication from them if you’re not getting a verbal reply. Prompt with words as needed to help.
- Use nonverbal cues yourself to help subtly indicate things to them when you see them struggle. For instance, if they can’t remember where their glasses are, you could gently nod with your chin in the right direction or reassure them with a look, or subtly tap on the drawer where they’re stored.
- If you see them getting upset or agitated, change the topic or change the scene. For instance, suggest an alternative activity like a walk or play music they like.
- Use humor to your advantage. Dementia doesn’t rob a person of their social skills, so use humor to keep things light and possibly even make them laugh and feel better in that moment.
- Avoid trying to prove them wrong. A person with dementia often get confused about reality and recall things that never really occurred. Avoid trying to convince them they are wrong. Even if you know they’re remembering something that didn’t happen, be gentle. Stay focused on the feelings they are demonstrating (which are real) and respond with verbal and physical expressions of comfort, support, and reassurance.
- Focus on older history, avoid questions relating to the recent past. Because of how dementia manifests, a person is often very clear about what happened decades ago though they may have no memory of last week or even that morning. Talk about things they do remember – it could be school or college memories, or something they did when they were younger.
2. Recognize Triggers For Difficult Behavior And Stay Calm
If the delusions someone with dementia experiences are severe and may put them or you, the caregiver, at possible risk or harm, it is best to speak to a doctor to see if some medication may be needed.6
A person with dementia can be susceptible to depression, anxiety, agitation, hallucinations, aggression, and loss of inhibition.7 While anxiety and depression issues may need to be dealt with the help of a trained mental health professional, the other behavior may have to be managed by you. You can cope with difficult behavior like aggression by:8
- Identifying triggers for the behavior to see if they can be fixed. Pain can often be the cause for the unusual behavior.
- Staying calm.
- Not taking the behavior personally. It is not directed at you, but just an expression of the emotions or confusion the patient is experiencing. This may be especially hard to do if the dementia has made them suspicious and they’re accusing you of things like theft, infidelity, or inappropriate behavior.
- Avoiding arguments and confrontation.
- Accepting this as a symptom of the illness as you would any other symptom of a disease.
3. Help Them Stay Organized – But Without Doing Everything For Them
Having a nighttime routine also helps with sleep problems that some seniors with dementia encounter. Doctors suggest non-drug options to manage sleep issues in those with dementia-related sleeping issues. The right room temperature, comfortable bedding, nightwear, and a soft light that isn’t too dark (which might make the home seem unfamiliar and dangerous) can help. So can reading or listening to music to wind down instead of television or a drink which can act as a stimulant and disrupt sleep.9
A person with dementia may need help with their daily tasks and life which they’d managed alone until now. Having a set routine can help. Don’t do everything for them though – it might make them feel unwanted or useless. Instead, have them do things with you or assist with little jobs around the house. If tasks seem daunting, break it down into simpler steps for them. You could even use notes or little posters at critical locations to help them remember what to do or how to do something.10
4. Keep Up Social Connections – Just 10 Minutes A Day Can Help
Things like music therapy or just playing some pleasing, quiet music, a massage, or exercise can help the mood and behavior of some people with dementia. Unfortunately, the research on these alternative therapies is not far-reaching enough to suggest them as treatment or therapy for dementia patients, but you could see if these work for your loved one.11
Encourage people to visit and meet with the patient. Sometimes the embarrassment or fear of others seeing the changed behavior, personality, and memory of the individual can be discouraging when it comes to having visitors. Overcome this, because these relationships are crucial. Keep up their routines and hobbies and interests as much as possible. If they were a weekly church-goer, go to church with them. If they liked walking in the park every evening, they should continue to do so, but with someone to help them if they forget their way home. Keep up as much of a semblance of normalcy as you can. As one study found, the impact this can have is huge! Researchers found that dementia patients who indulged in as little as 60 minutes of conversation every week – which translates to an average of 8.5 minutes a day – saw reduced agitation levels. This also cut down the perception of pain they were living with.12
5. Ensure The Right Nutrition
It is easy for someone with dementia to forget to eat balanced and nutritious meals, making them susceptible to deficiencies and malnutrition, so you’ll need to also keep track of their diet. Due to an inability to express what they want at times, a person with dementia may not be able to say they are hungry or ask for what they need. Keep food and snacks and drinks readily available and visible to them so they can help themselves to what they need, without having to constantly struggle with asking. A person with dementia may lose their sense of smell so stronger flavors and more seasoning may help them keep up their appetites.13
6. Deal With Personal Hygiene And Incontinence
Urinary tract infections, incontinence, constipation – these are just some issues the elderly have to deal with. Add to that the tendency to forget the need to go to the toilet or even where the toilet actually is, and a person with dementia has even more trouble. Prominently signpost the toilet with a board of some kind, keep the door open for easy access, and ensure the person with dementia has clothes that are quickly removed – using a zipper instead of buttons helps. When it comes to personal hygiene, the fear of falling or becoming disoriented might keep someone from washing regularly. Some patients may allow a caregiver to help with this or be present when they are bathing.14
7. Decide On Future Financial And Medical Plans With The Patient
It is important to get clarity on how to cope as time progresses and the dementia worsens. You should have clear plans worked out on who will manage the banking and financial affairs of the individual. Share your number with the utility company, informing them of the condition of your loved one, so that power supply or heating isn’t cut off if they forget to pay their bills. Also do the difficult task of discussing which medical treatments they would prefer not to be subjected to, should the need arise at a future date.15 This legal document is known as an advance care directive and details what health decisions can be made on their behalf if they are no longer capable of doing so.16
8. Don’t Forget To Care For Yourself Too!
Joining a carers’ group can be a good way for you to find people who truly relate to the situation you are in. It is a good place to share and talk it out or learn coping mechanisms others use to care for those with dementia. Social services or a dementia adviser or counselor can direct you to a local group. Alternatively, there are plenty of online support groups you could consider joining.17
When you are close to someone with dementia you may find yourself asking “why me.” You may also get upset, angry, or frustrated, and possibly even feel guilty about thinking this way. At times, you may feel you are losing the love or affection you have for that person as these emotions take control. On the flip side, you may also feel guilty for taking time out to do something for yourself, or about losing your temper at them or not being kind enough. Don’t beat yourself up about it. This is as hard on you as it is on the person you love who has dementia. And you need downtime too. Some of these things could help:18
- Get organized. Make a list, plan, and prioritize your life so that you schedule in some downtime for yourself too.
- Set realistic goals and tasks for yourself. Don’t expect too much of yourself.
- Don’t compare. It is easy to fall into the trap of comparing yourself to other caregivers or people in a similar situation who are seemingly doing a greater job of managing their lives and their loved ones. For one thing, you don’t know the whole story – they might have as much trouble as you do or may have more help. Each situation and each person is different and so too the experience of caregiving.
- Get help if the negative emotions are stifling you. Take control of your emotions and try and fix how you feel with the help of others around you, others in your situation, or professionals.
- Give yourself breaks. Even if it is a day or two away, try and organize for a little breather for yourself. If that isn’t possible, explore options for day help from a professional caregiving service or daycare center for seniors. Then, take time for yourself to do anything – it could be just watching a movie, meeting a friend for coffee, or a day at the spa. You’ve earned it, so don’t feel guilty. Just make sure they have the right support and care in your absence so you don’t have to constantly worry during your break.
|↑1||Dementia Statistics. Alzheimer’s Disease International.|
|↑2||What is dementia? National Institute on Aging.|
|↑3, ↑7||Caring for someone living with dementia. MyAgedCare, Commonwealth of Australia.|
|↑4||Hallucinations and Alzheimer’s. Alzheimer’s Association.|
|↑5||Caregiver’s Guide to Understanding Dementia Behaviors. Family Caregiver Alliance.|
|↑6||Suspicion, Delusions and Alzheimer’s. Alzheimer’s Association.|
|↑8||Stages and Behaviors. Alzheimer’s Association.|
|↑9||Sleep Issues and Sundowning. Alzheimer’s Association.|
|↑10, ↑14||Looking after someone with dementia. National Health Service.|
|↑11||Livingston, Gill, Kate Johnston, Cornelius Katona, Joni Paton, Constantine G. Lyketsos, and Old Age Task Force of the World Federation of Biological Psychiatry. “Systematic review of psychological approaches to the management of neuropsychiatric symptoms of dementia.” American Journal of Psychiatry 162, no. 11 (2005): 1996-2021.|
|↑12||Just an Hour a Week of Social Interaction Helps Dementia Patients. AARP(formerly American Association of Retired Persons).|
|↑13||Why nutrition is important for people with dementia. Social Care Institute For Excellence.|
|↑15, ↑17||Caring for someone with dementia. Age UK.|
|↑16||How To Prepare To Care For Someone With Dementia. Forbes.|
|↑18||Caring for a person with dementia. Alzheimer’s Society.|