Common Frustrations & Difficulties
Communicating with a person with memory loss can be difficult, but the right strategies can bridge the gap and foster a more fulfilling relationship between the patient and/or loved one. For caregiverswhether you’re a professional or a family member caring for a loved oneits important to adopt a positive attitude to effectively communicate.
Engaging with patients and/or loved ones in an encouraging and patient manner will help minimize feelings of frustration. If you’re struggling to connect with a patient and/or loved one with memory loss, its important to know a few common frustrations and traps and how you can avoid them.
First, remind yourself that people with dementia and/or Alzheimers only have the present moment, so we can let them know that we enjoy their company. When caring for someone who has the disease, the most important thing to take care of is that persons feelings. A person with memory loss cant remember the minute before, they dont know whats going to happen in the next minute. They cant do that kind of thinking, so how they feel right now is the most important thing to pay attention to.
Caregiving In The Early Stages Of Alzheimers Or Dementia
In the early stages of Alzheimers disease or another type of dementia, your loved one may not need much caregiving assistance. Rather, your role initially may be to help them come to terms with their diagnosis, plan for the future, and stay as active, healthy, and engaged as possible.
Accept the diagnosis. Accepting a dementia diagnosis can be just as difficult for family members as it for the patient. Allow yourself and your loved one time to process the news, transition to the new situation, and grieve your losses. But dont let denial prevent you from seeking early intervention.
Deal with conflicting emotions. Feelings of anger, frustration, disbelief, grief, denial, and fear are common in the early stages of Alzheimers or dementiafor both the patient and you, the caregiver. Let your loved one express what theyre feeling and encourage them to continue pursuing activities that add meaning and purpose to their life. To deal with your own fears, doubts, and sadness, find others you can confide in.
Make use of available resources. There are a wealth of community and online resources to help you provide effective care on this journey. Start by finding the Alzheimers Association in your country . These organizations offer practical support, helplines, advice, and training for caregivers and their families. They can also put you in touch with local support groups.
Make Time For Reflection
At each new stage of dementia, you have to alter your expectations about what your loved one is capable of. By accepting each new reality and taking time to reflect on these changes, you can better cope with the emotional loss and find greater satisfaction in your caregiving role.
Keep a daily journal to record and reflect on your experiences. By writing down your thoughts, you can mourn losses, celebrate successes, and challenge negative thought patterns that impact your mood and outlook.
Count your blessings. It may sound counterintuitive in the midst of such challenges, but keeping a daily gratitude list can help chase away the blues. It can also help you focus on what your loved one is still capable of, rather than the abilities theyve lost.
Value what is possible. In the middle stages of dementia, your loved one still has many abilities. Structure activities to invite their participation on whatever level is possible. By valuing what your loved one is able to give, you can find pleasure and satisfaction on even the toughest days.
Improve your emotional awareness. Remaining engaged, focused, and calm in the midst of such tremendous responsibility can challenge even the most capable caregivers. By developing your emotional awareness skills, however, you can relieve stress, experience positive emotions, and bring new peace and clarity to your caretaking role.
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Stage : Moderately Severe Decline
Your loved one might start to lose track of where they are and what time it is. They might have trouble remembering their address, phone number, or where they went to school. They could get confused about what kind of clothes to wear for the day or season.
You can help by laying out their clothing in the morning. It can help them dress by themselves and keep a sense of independence.
If they repeat the same question, answer with an even, reassuring voice. They might be asking the question less to get an answer and more to just know you’re there.
Even if your loved one can’t remember facts and details, they might still be able to tell a story. Invite them to use their imagination at those times.
Use A Range Of Things To Stimulate Memories
For people with cognitive difficulties, it is important to tap into all the senses to trigger memories. A picture to look at, an object to touch, a song or a poem to listen to or something to smell or taste can all take someone back in time, often to a very specific memory.
If you know the person well enough, you will know the kinds of things that might relate to their past. If you know someone has been in the army, a picture of a person in an army uniform from a similar period to when they were in the forces might spark their interest. If you are working with a person from the Caribbean, offering some sorrel and ginger tea or playing some Caribbean or steel band music might be a good starting point. Reading an extract from an old book or a newspaper can also stimulate memories.
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Patient Who Does Not Want To Know
Nine participants did not want to know what was wrong with them or to receive any information about their illness. Although we did not asked them why, some of them spontaneously tried to explain their choice. Their motives seem to display a wide spectrum from probably full insight through more or less conscious decisions not to know the truth to complete denial of their illness .
I could not find any clinical or demographic characteristics indicating those who would prefer to be told from those who would not.
Memory In The Later Stages
The person may believe they are living in an earlier time period from their life . This can mean they say things and behave in ways that don’t make sense to those around them. The person may also confuse those around them for someone else .
The person may respond and experience emotions related to how they felt in the past. The person’s emotions are often related to how they’re currently seeing their situation – for instance, they might become distressed because they believe they need to go and collect their children from school but they are being prevented from doing this.
The person may no longer be able to recognise themselves or other people such as their partner, friends and family. This may also be due to them believing they are in a different time period, and this can be very difficult for the person and those around them.
The person may become upset when looking at themselves in the mirror or think there are strangers in the house, for example. It can be extremely difficult when someone with dementia is not able to remember their own family or close friends. Don’t take this personally. This memory loss is caused by the progression of the dementia.
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Dont Ask A Person With Short
A patient and/or loved one can construe even the simplest of conversation starters as a real question, but they honestly dont know the answer to it. This can be embarrassing and can send them back into a fogthey try their best to give an answer that makes sense to them and often produce immediate physical concerns: I’m having a lot of pain, for example. A caregiver and/or family member might ask, What did you have for breakfast? and the person with memory loss doesn’t remember at all. They might say earnestly, I haven’t had anything to eat for weeks, . So these are questions to avoid because it causes fear for the person, that they have failed. But there things you can talk about
Repetitive Speech Or Actions
People with dementia will often repeat a word, statement, question, or activity over and over. While this type of behavior is usually harmless for the person with dementia, it can be annoying and stressful to caregivers. Sometimes the behavior is triggered by anxiety, boredom, fear, or environmental factors.
- Provide plenty of reassurance and comfort, both in words and in touch.
- Try distracting with a snack or activity.
- Avoid reminding them that they just asked the same question. Try ignoring the behavior or question, and instead try refocusing the person into an activity such as singing or âhelpingâ you with a chore.
- Donât discuss plans with a confused person until immediately prior to an event.
- You may want to try placing a sign on the kitchen table, such as, âDinner is at 6:30â or âLois comes home at 5:00â to remove anxiety and uncertainty about anticipated events.
- Learn to recognize certain behaviors. An agitated state or pulling at clothing, for example, could indicate a need to use the bathroom.
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Why Reminiscence Works For People With Dementia
Reminiscence means sharing life experiences, memories and stories from the past. Typically, a person with dementia is more able to recall things from many years ago than recent memories, so reminiscence draws on this strength. So many of our conversations and interactions rely on short-term memory. Reminiscence can give people with dementia a sense of competence and confidence through using a skill they still have.
We all possess memories, we all have our own unique life history. Recalling the past is a means of owning it and hence preserving ourselves. It is a here and now process which holds the teller and the told in relationship with each other.
Faith Gibson
Many people with dementia find themselves routinely having things done for them or to them. When a person shares something about their past and another person shows interest or enjoyment, it is a wonderful opportunity for that person to feel that they are the one who is giving something to another human being, rather than always being the one who is receiving or listening.
Talking about the past can also bring up happy memories and good feelings, and this can be wonderful in itself, but particularly if a person is finding life difficult.
It is also the case that reminiscence can sometimes provoke painful memories. Emotional reactions are not necessarily a bad thing, but we need to respond sensitively.
How Dementia Causes Death
A person in the late stage of dementia is at risk for many medical complications, like a urinary tract infection and pneumonia . They’re at an even higher risk of certain conditions because they’re unable to move.
Trouble swallowing, eating, and drinking leads to weight loss, dehydration, and malnutrition. This further increases their risk of infection.
In the end, most people with late-stage dementia die of a medical complication related to their underlying dementia.
For example, a person may die from an infection like aspiration pneumonia. This type of pneumonia usually happens because of swallowing problems.
A person may also die from a blood clot in the lung because they are bedbound and not mobile.
It’s important to know that late-stage dementia is a terminal illness. This means that dementia itself can lead to death. Sometimes this is appropriately listed as the cause of death on a death certificate.
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Ten Tips For Communicating With A Person With Dementia
We arenât born knowing how to communicate with a person with dementiaâbut we can learn. Improving your communication skills will help make caregiving less stressful and will likely improve the quality of your relationship with your loved one. Good communication skills will also enhance your ability to handle the difficult behavior you may encounter as you care for a person with a dementing illness.
Should You Tell The Person They Have Alzheimer’s
Families may frequently ask, Should I tell the person that he/she has Alzheimer’s? Keep in mind that the patient and/or loved one can’t reason. They don’t have enough memory to remember the question, then think it through to form a conclusion. Caregivers and/or family members may often think if they tell the person with memory loss that he/she has Alzheimer’s, then he/she will understand and cooperate. You cant get cooperation by explaining that he/she has the disease and expect him/her to remember and use that information.
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Distraction: Singing & Reading
For some people, a distraction can be a good way to get the chore done. Its kind of a different communication style that helps in distressing situations. For example, if a patient and/or loved one likes singing, starting him/her singing could allow the caregiver and/or family member to ease into bathing time with a gesture.
Singing actually can help tremendously with memory loss patients and/or loved ones who can no longer talk, or have trouble finding words to form sentences, because they are usually still able to sing a song. Often, they can remember the lyrics of a song from beginning to end.
Many patients and/or loved ones can still read as well. Singing and reading can give the person great joy and hearing a loved ones voice can very comforting for family members.
How Alzheimer’s Causes Death
In late-stage Alzheimer’s disease, people become extremely confused and disoriented. The behavior of someone with late stage Alzheimer’s may become more agitated and restless, while other persons experience withdrawal and apathy. Sometimes, people with later stage dementia cry and call out. Eventually, they lose the ability to communicate, and they may not respond at all.
Additionally, people in the late stages are unable to care for themselves, becoming bedbound and completely dependent on others for their activities of daily living. Their ability to be continent of bowel and bladder declines.
Their appetite decreases as well, and eventually, they lose the ability to swallow, leading to poor nutrition and a high risk of aspiration. Aspiration, where a person’s food goes “down the wrong tube” when they swallow it, greatly increases the risk of pneumonia developing because they’re not able to fully cough and clear the food out of their esophagus and then it settles into their lungs.
Under these difficult conditions, it’s not hard to imagine how vulnerable people with late-stage dementia become, sometimes succumbing to infections, pressure sores, and pneumonia. One study found that half of all people with dementia admitted to a hospital for pneumonia or a hip fracture died within six months of leaving the hospital.
Other factors that impact the death rate in Alzheimer’s disease include advanced age, increased falls, and delirium.
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How The Disease Affects The Brain
Physiologically, dementia and/or Alzheimers affects various parts of the brain, specifically, it affects the brain in such a way that people have a difficult time learning new information. This is why, for a long time into the disease, patients and/or loved ones can remember things that happened a long time ago. They can remember wedding dates, the war they fought in, where they went to high schoolbut they can’t remember the visit that they had with their daughter yesterday. This is because the disease affects certain parts of the brainthe temporal lobeswhich are responsible for helping us learn new things.
The reason theyre able to hold onto the memories that happened a long time ago is because those memories are represented throughout the brain. Long-term memories don’t require just one or two areas of the brainthey’re probably represented in multiple systemsso the disease has to be quite advanced before patients and/or loved ones start losing those memories.
In the brain of someone with dementia and/or Alzheimer’s, there are actual holes in the brain that form. In an image of an Alzheimer’s brain, one can see where many of the brain cells have diedand it affects every area of the brain.
Tips For Everyday Care For People With Dementia
Early on in Alzheimers and related dementias, people experience changes in thinking, remembering, and reasoning in a way that affects daily life and activities. Eventually, people with these diseases will need more help with simple, everyday tasks. This may include bathing, grooming, and dressing. It may be upsetting to the person to need help with such personal activities. Here are a few tips to consider early on and as the disease progresses:
- Try to keep a routine, such as bathing, dressing, and eating at the same time each day.
- Help the person write down to-do lists, appointments, and events in a notebook or calendar.
- Plan activities that the person enjoys and try to do them at the same time each day.
- Consider a system or reminders for helping those who must take medications regularly.
- When dressing or bathing, allow the person to do as much as possible.
- Buy loose-fitting, comfortable, easy-to-use clothing, such as clothes with elastic waistbands, fabric fasteners, or large zipper pulls instead of shoelaces, buttons, or buckles.
- Use a sturdy shower chair to support a person who is unsteady and to prevent falls. You can buy shower chairs at drug stores and medical supply stores.
- Be gentle and respectful. Tell the person what you are going to do, step by step while you help them bathe or get dressed.
- Serve meals in a consistent, familiar place and give the person enough time to eat.
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