Connect With A Dementia
In Johns Hopkins Maximizing Independence at Home trial,researchers found that patients who were in contact with a care coordinatorat least once a month for 18 months were 50 percent less likely to move toan institution or pass away than those in the control group. Carecoordinators can help with safety concerns, medical attention, medicationmanagement, legal andadvance-care-planningadvice, nutrition support and more. They can be especially helpful when aloved one is dealing with other medical conditions for which she needstreatmentand research has shown that about 60 percent are.
Caregiving In The Late Stages Of Alzheimers Or Dementia
As Alzheimers or another dementia reaches the late stages, your loved one will likely require 24-hour care. They may be unable to walk or handle any personal care, have difficulty eating, be vulnerable to infections, and no longer able to express their needs. Problems with incontinence, mood, hallucinations, and delirium are also very common.
In your role as caregiver, youll likely be combining these new challenges with managing painful feelings of grief and loss and making difficult end-of-life decisions. You may even be experiencing relief that your loved ones long struggle is drawing to an end, or guilt that youve somehow failed as a caregiver. As at the other stages of your caregiving journey, its important to give yourself time to adjust, grieve your losses, and gain acceptance.
Since the caregiving demands are so extensive in the later stages, it may no longer be possible for you to provide the necessary care for your loved one alone. If the patient needs total support for routine activities such as bathing, dressing, or turning, you may not be strong enough to handle them on your own. Or you may feel that youre unable to ease their pain or make them as comfortable youd like. In such cases, you may want to consider moving them to a care facility such as a nursing home, where they can receive high levels of both custodial and medical care.
Connecting in the late stages of care
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.
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If He Or She Doesn’t Recognise Their Environment As ‘home’ At That Moment Then For That Moment It Isn’t Home
Try this instead:
Try to understand and acknowledge the feelings behind the wish to go home. Find out where ‘home’ is for them – it might not be the last place they lived. It could be where they lived before moving recently or it could be somewhere from their distant past.
Often people with dementia describe ‘home’ as a pleasant, peaceful or idyllic place where they were happy. They could be encouraged to talk about why they were happy there. This can give an idea as to what they might need to feel better.
Do Activities Matter For A Person In The Later Stages Of Dementia
It can be easy to assume that when a person is no longer communicating with words or is spending much of their day in bed, the emphasis will be on keeping the person physically comfortable and activities become less relevant. However, a person in the advanced stages of dementia can still experience emotions such as loneliness, boredom or frustration.
A person might no longer be able to move independently or hold a conversation. However, many people with dementia will respond positively to close one-to-one attention using the eyes to communicate or hands to touch and make a connection.
Nearly all the external things, the ones we take for granted and which the world values, may be swept away, but the real Malcolm, the essence he was born with, was there right to the end.
Barbara Pointon cared for her husband Malcolm, who had dementia
For more on these ideas, you might like to look at the feature on Communication in the later stages in the section on Communicating well.
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Preserving Your Loved Ones Independence
Take steps to slow the progression of symptoms. While treatments are available for some symptoms, lifestyle changes can also be effective weapons in slowing down the diseases progression. Exercising, eating and sleeping well, managing stress, and staying mentally and socially active are among the steps that can improve brain health and slow the process of deterioration. Making healthy lifestyle changes alongside your loved one can also help protect your own health and counter the stress of caregiving.
Help with short-term memory loss. In the early stages, your loved one may need prompts or reminders to help them remember appointments, recall words or names, keep track of medications, or manage bills and money, for example. To help your loved one maintain their independence, instead of simply taking over every task yourself, try to work together as a partnership. Let your loved one indicate when they want help remembering a word, for example, or agree to check their calculations before paying bills. Encourage them to use a notebook or smartphone to create reminders to keep on hand.
Taking Care Of An Alzheimers Patient Has Its Rewards
Taking care of Alzheimers patients can be time-consuming, frustrating, and sometimes heartbreaking. However, it can also be rewarding. When you care for someone whose capabilities and perhaps personality are gone, you learn how to be compassionate and live with grace. And when you make the most of the time they have left, you offer a special gift to the world and to yourself.
If you are unsure of how to best help an aging loved one, the trained and compassionate staff at the Institute on Aging is here to help you make that decision and gain the best in at-home senior care. Contact us to find out more.
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Feeding An Alzheimers Patient
Did you know that Alzheimers can change a persons eating habits and behaviors? This comes as a surprise to many people when they begin to care for this population. Forgetting how to use utensils and napkins or even forgetting to eat at all are all very common, especially in the latter stages of the disease. Your senior may also refuse to eat at times.
But there are several things you can do to making mealtimes less of a battle for you both. First, make sure they have a quiet, distraction-free environment in which to eat. Remember Alzheimers patients are often overwhelmed easily, so even the presence of a TV thats on may be unwise. Just like dressing, try to serve meals around the same time every day. Dont serve food or drink that is too hot, and hand-feed them if necessary. Prepare foods they have enjoyed before, but bear in mind these preferences may change over time.
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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How Stimulating Activities Impact People With Alzheimers
Keeping senior loved ones active in hobbies and interests that give them pleasure is important after a disease diagnosis.
Stimulating activities can help people with Alzheimers:
- Encourage self-expression
- Foster emotional connections with others
- Lessen any anxiety and irritability that Alzheimers may bring
- Make people with Alzheimers feel more engaged
- Stir memories
As AARP.org describes, it is important to create meaningful activities for your parents and senior loved ones, not just ones that fill time. Consider interests they had in the past, knowing that some activities may need to be modified for practicality and safety. Keep in mind that Alzheimers affects behavior and senses in addition to memory. So, the activities that a person once enjoyed may become frustrating or overwhelming now.
Dressing And Grooming Your Senior With Alzheimers
The first step in improving an Alzheimer patients routine is to establish one in the first place. In fact, this can be done right at the start of the day, when the patient is getting dressed. Dressing at the same time every morning and limiting their clothing to just a few outfits can set up a healthy pattern.
Loose-fitting clothing preferably of a soft and/or stretchy fabric will make dressing them easier for you, and wearing the clothes more comfortable for them. If you can obtain pieces that have Velcro instead of zippers, buttons, and more complicated fasteners, then all the better. With regard to shoes: comfortable slip-ons with grips on the bottom will make donning footwear less troublesome, and will also make the senior less likely to trip and fall once the shoes are on.
Be especially gentle when combing their hair and brushing their teeth. If they appear to be in distress or are struggling, its all right to take frequent breaks. Make sure to allow for enough time to complete these tasks, and note that it will probably take you longer than normal to do so.
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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 To Choose The Most Appropriate Activities For A Loved One With Dementia
Selecting activities for a loved one with dementia is a very personal choice and should be based on your care recipients interests and abilities. With so many excellent ideas in this post and other sources, most caregivers will find a few activities that are meaningful and enjoyable for their loved one. When selecting your activities, here are a few things to keep in mind.
- Choose the Right Time for Each Activity. When starting an activity with a loved one, make sure that they are not particularly anxious or preoccupied with other things. If the time is not right for an activity, its usually best to postpone it and switch gears to a less-stressful activity. When the time is right, choose a clutter-free area to avoid distractions. It may also be helpful to plan activities based on the time of day. For example, you can choose gentle and relaxing activities like listening to music in the evening hours before bed.
- Adapt Activities to Match Abilities. Its a good idea to check with your loved ones healthcare providers to ensure that a new activity or exercise is safe for your loved one. Also, start small and give the person time to make progress, which will make the effort more rewarding. Activities that involve creativity like art are especially useful, as you will have something to display and enjoy after finishing.
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Consider Moving To A 55
Safety features, such as nonslip tubs, are already in place, and neighborsmay have loved ones in similar situations. Have more financial flexibility?Continuing-care retirement communities allow the person with dementia toaccess higher levels of care while a more active spouse can liveindependently on the same campus.
Engage Them In Their Favourite Activities
Doing their favourite hobbies and interests them can be a great way to engage them in stimulating activities. Its always useful to ask your loved one what they might like to do first, so that you can make sure activities are really tailored to them. One way of doing this is by asking them to show you their favourite hobby.
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Independence Aids For The Person With Dementia
- hand-held shower hoses that allow a person to direct the flow of water as desired
- a shower chair or bath seat that allows a person to be seated while bathing and eliminates the need to lower oneself into the bath
- handrails near the bath, shower and toilet to provide support and balance
- easy-to-read clocks and large calendars to help orient to date and time
- heat sensors or alarms in case of emergency
- a list of contact names and numbers in large print placed by the telephone allows the person to stay connected more easily.
The Alzheimers And Dementia Care Journey
Caring for someone with Alzheimers disease or another type of dementia can be a long, stressful, and intensely emotional journey. But youre not alone. In the United States, there are more than 16 million people caring for someone with dementia, and many millions more around the world. As there is currently no cure for Alzheimers or dementia, it is often your caregiving and support that makes the biggest difference to your loved ones quality of life. That is a remarkable gift.
However, caregiving can also become all-consuming. As your loved ones cognitive, physical, and functional abilities gradually diminish over time, its easy to become overwhelmed, disheartened, and neglect your own health and well-being. The burden of caregiving can put you at increased risk for significant health problems and many dementia caregivers experience depression, high levels of stress, or even burnout. And nearly all Alzheimers or dementia caregivers at some time experience sadness, anxiety, loneliness, and exhaustion. Seeking help and support along the way is not a luxury its a necessity.
Just as each individual with Alzheimers disease or dementia progresses differently, so too can the caregiving experience vary widely from person to person. However, there are strategies that can aid you as a caregiver and help make your caregiving journey as rewarding as it is challenging.
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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.
Common Symptoms Of Dementia
The signs and symptoms of dementia vary from one individual to another. Additionally, it also varies depending on the stages of dementia. Here are some of the common symptoms exhibited by people with dementia
- Difficulty in finding the right words to describe something.
- Memory loss which is noticed by their partner or a close relative.
- Problem reasoning and solving life problems in general.
- Difficulty when handling complex tasks
- Issues with coordination and motor skills
- Confusion and disorientation
- Problems with planning and staying organized
- Problems with spatial and visual abilities, eg, getting lost when driving
Psychological changes
You may also observe changes on the patients behaviour. Such as
- Inappropriate behavior
- Anxiety
- Depression
Talk to your doctor if you observe these signs in your loved ones, in order to device a daily care plan.
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Planning For The Future
- Talk to the person with dementia to make sure that they have a current up-to-date will that reflects their wishes.
- Encourage the person with dementia to set up a Lasting Power of Attorney so that a responsible person can make decisions on their behalf when they are no longer able to.
- Talk to the person with dementia about making an advance decision to refuse certain types of medical treatment in certain situations. It will only be used when the person with dementia has lost the capacity to make or communicate the decision in the future.
- If the person youre caring for has already lost the ability to make or communicate decisions but doesnt have an LPA, you can apply to the Court of Protection who can make decisions on behalf of that person or appoint someone else to do so.
If the person you care for drives, the law requires them to tell DVLA about their diagnosis. A diagnosis of dementia doesn’t automatically mean someone has to stop driving straight away what matters is that they can drive safely.