If Someone Is Not Able To Make A Decision
Health professionals can still give treatment if they believe it is in the persons best interests. But they must try to get advice about the persons wishes from a partner, family member or friend.
If the person with dementia does not have family or friends who can help, they may be referred to an independent advocate. This is someone who can support and act for the person through making any decision, such as whether to have serious medical treatment. The Social Care Institute for Excellence has more information on independent advocates.
The person you care for may have given someone legal power to make decisions for them. This is called lasting power of attorney. We have more information on advance care planning.
It can help the person you care for to think ahead, before their ability to make decisions is affected. They can write down how they would like to be cared for. It is helpful to give clear instructions about any treatments they would or would not want to have. This is known as making advance decisions.
Things Not To Say To Someone With Dementia
Speaking to an elderly loved one with dementia can be difficult and emotionally draining. Alzheimers and dementia can lead to conversations that dont make sense, are inappropriate or uncomfortable, and may upset a family caregiver. However, over time, its important to adapt to the seniors behavior, and understand that their condition doesnt change who they are.
For senior caregivers, its important to always respond with patience. Here are some things to remember not to say to someone with dementia, and what you can say instead.
1. Youre wrong
For experienced caregivers, this one may seem evident. However, for someone who hasnt dealt with loss of cognitive function before, it can be hard to go along with something a loved one says that clearly isnt true. Theres no benefit to arguing, though, and its best to avoid upsetting a senior with dementia, who is already in a vulnerable emotional state due to confusion.
Instead, change the subject.
Its best to distract, not disagree. If an elderly loved one makes a wrong comment, dont try to fight them on it; just change the subject and talk about something else ideally, something pleasant, to change their focus. There are plenty of things not to say to someone with dementia, but if theres one to remember, its anything that sounds like youre wrong.
2. Do you remember?
Instead, say: I remember
3. They passed away.
4. I told you
Instead, repeat what you said.
The Challenges And Rewards Of Alzheimers Care
Caring for a person with Alzheimers disease or dementia can often seem to be a series of grief experiences as you watch your loved ones memories disappear and skills erode. The person with dementia will change and behave in different, sometimes disturbing or upsetting ways. For both caregivers and their patients, these changes can produce an emotional wallop of confusion, frustration, and sadness.
As the disease advances through the different stages, your loved ones needs increase, your caregiving and financial responsibilities become more challenging, and the fatigue, stress, and isolation can become overwhelming. At the same time, the ability of your loved one to show appreciation for all your hard work only diminishes. Caregiving can literally seem like a thankless task.
For many, though, a caregivers journey includes not only huge challenges, but also many rich, life-affirming rewards.
Caregiving is a pure expression of love. Caring for a person with Alzheimers or dementia connects you on a deeper level. If you were already close, it can bring you closer. If you werent close before, it can help you resolve differences, find forgiveness, and build new, warmer memories with your family member.
Caregiving can teach younger family members the importance of caring, compassion, and acceptance. Caregiving for someone with dementia is such a selfless act. Despite the stress, demands, and heartache, it can bring out the best in us to serve as role models for our children.
Can Dementia Be Prevented
Because the causes of dementia are not yet fully known, there is no sure way to prevent dementia. However, you can reduce the risk of dementia by caring for your:
- Heart health Whats good for your heart is good for your brain. Have a healthy diet and stop smoking.
- Body health Regular physical activity increases blood flow to the brain. Keep an active lifestyle.
- Mind health An active mind helps build brain cells and strengthens their connections. Stay social, play games like puzzles and crosswords, and take up new hobbies and languages.
Learn more about the risk factors of dementia such as ageing, smoking and high cholesterol and blood pressure:
Risk Factors And Prevention
Although age is the strongest known risk factor for dementia, it is not an inevitable consequence of ageing. Further, dementia does not exclusively affect older people young onset dementia accounts for up to 9% of cases. Studies show that people can reduce their risk of dementia by getting regular exercise, not smoking, avoiding harmful use of alcohol, controlling their weight, eating a healthy diet, and maintaining healthy blood pressure, cholesterol and blood sugar levels. Additional risk factors include depression, low educational attainment, social isolation, and cognitive inactivity.
Play To Their Strengths
Sometimes memory loss is so devastating that we all forget that there is a person still in there somewhere. Family members can be distraught by what’s missing and forget that there’s still a lot there within the person, and that they have strengths.
They still have long-term memory, so its up to the caregiver and/or family member to find them. It’s interesting that, medically, doctors do tests on other conditions but when it comes to memory loss, it’s often looked at like a switch: Either they got it, or they don’t. Just like everything else, there’s a progression of memory loss, and its up to the caregiver and/or family member to find out where the patient and/or loved one is, and bolster that.
Strength #1: Long-term memory & stories
Everyone has a short-term memory drawer and long-term memory drawer, and we put information in each. People with dementia and/or Alzheimers have a short-term memory drawer that has no bottom. He/she puts things in, and then they get lost. The long-term memory drawer, however, has a solid bottom. Lots of stories that are retrievable await . Encourage your patients and/or loved ones to tell you stories. You can even use photos to encourage stories. Photos are wonderful long-term memory reminders.
Strength #2: Humor & music
Strength #3: Spirituality
Helping Patients And Their Caregivers With End
If a patient moves forward with designating a surrogate decision maker, the psychiatrist should ask both the patient and the potential decision maker to carefully consider how assuming this role will affect both of them and their relationship together. For example, a loved one who has been designated as the decision maker may unconsciously distance him- or herself from the patient in order to protect him- or herself from later emotional stress. The patient may then want to consider designating someone not as closely related to be the decision maker.
Rabins states that another factor to consider is that often those who are assigned the role of decision maker may later feel bad about decisions they made, regardless of what they decided, even when advance directives were in place.
Rabins’s assertion above is wholly sound. In one review of 40 studies and 2,854 people, nearly one-third of surrogate decision makers indicated that their emotional burden from making treatment decisions was substantial, and it lasted, in some cases, several years. Chief among these negative feelings was guilt and doubt over whether they had made the best decisions. Loved ones of patients with TBI may experience this also, even when a pathological response is not present. . They may feel grief, anger, guilt, and even denial even 20 years later.
Dont Talk Down To Them
Caregivers and/or family members should never talk down to the individual with dementia and/or Alzheimer’s, and this especially includes baby talk, which doesn’t work neurologically . The fact that the patient and/or loved one is having problems with language does not mean that talking to them like a four-year-old is going to help. The communication style should still be to a respected, older adult.
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.
Keep The Commode Clean And Out Of The Way
Perhaps your loved one’s bedroom is on the main floor of your home. If a friend is coming to visit, be sure to clean the portable commode and move it out of the mainline of sight. This helps protect the dignity of your loved one since others don’t need to know that they need assistance with using the toilet or have problems with incontinence.
How Can You Cope With Being The Caretaker Of Someone With Dementia
It is important for someone who is the primary caregiver of a patient with dementia to have a strong network of support. This is needed both to aid in caring for the patient and to give the caregiver some intermittent relief. In the early stages, many caregivers function more as a helper or guide, providing reminders for different tasks. Later in the disease, caregivers may have to supply basic care to the patient, including assistance with bathing, dressing, and going to the bathroom.
Obtaining power of attorney status for financial and medical matters and determining when a patient is no longer able to perform certain activities, such as driving, are difficult but necessary actions. Local Alzheimer’s Association chapters are often helpful in completing these tasks. Enlisting the help of a patient’s physician or mandating an on-the-road driving assessment can place the responsibility of determining when a patient is no longer safe to drive on someone other than a caregiver or family member, as driving is often an action that many patients attempt to perform far past the time when it is safe to continue. There are many sources of assistance for caregivers of patients with dementia:
Alzheimer’s and Dementia Caregiver CenterAlzheimer’s Association
What Are The Signs And Symptoms Of Dementia
Signs and symptoms of dementia result when once-healthy neurons, or nerve cells, in the brain stop working, lose connections with other brain cells, and die. While everyone loses some neurons as they age, people with dementia experience far greater loss.
The symptoms of dementia can vary and may include:
- Experiencing memory loss, poor judgment, and confusion
- Difficulty speaking, understanding and expressing thoughts, or reading and writing
- Wandering and getting lost in a familiar neighborhood
- Trouble handling money responsibly and paying bills
- Repeating questions
- Not caring about other peoples feelings
- Losing balance and problems with movement
People with intellectual and developmental disabilities can also develop dementia as they age, and recognizing their symptoms can be particularly difficult. Its important to consider a persons current abilities and to monitor for changes over time that could signal dementia.
How Is Dementia Treated
Medicines may slow down dementia, but they don’t cure it. They may help improve mental function, mood, or behavior.
Palliative care is a kind of care for people who have a serious illness. It’s different from care to cure the illness. Its goal is to improve a person’s quality of lifenot just in body but also in mind and spirit.
Care may include:
- Tips to help the person be independent and manage daily life as long as possible.
- Medicine. While medicines can’t cure dementia, they may help improve mental function, mood, or behavior.
- Support and counseling. A diagnosis of dementia can create feelings of anger, fear, and anxiety. A person in the early stage of the illness should seek emotional support from family, friends, and perhaps a counselor experienced in working with people who have dementia.
Treatment as dementia gets worse
The goals of ongoing treatment for dementia are to keep the person safely at home for as long as possible and to provide support and guidance to the caregivers.
The person will need routine follow-up visits every 3 to 6 months. The doctor will monitor medicines and the person’s level of functioning.
At some point, the family may have to think about placing the person in a care facility that has a dementia unit.
How To Talk To Someone With Dementia Alzheimer’s Or Memory Loss
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 you and your patient or loved one.
Those struggling to communicate with a person who has memory loss are not alone. As many as four million people in the US may have Alzheimer’s, and, as our population ages, that number is expected to increase. Anyone who is a senior caregiver is likely to be affected and will need to understand how to cope with what is happening.
Memory loss associated with aging, dementia, and Alzheimer’s typically doesnt happen overnight. Slowly, little-by-little, it sneaks up, until one day, family members realize that they can no longer communicate in the same way with the person they’ve known for years. They suddenly can’t rely on their words and their sentences dont match the situation.
Because we cannot see the diseasethe way we see a broken armits even more confusing when caregivers see how their patient and/or loved one will have good and bad days. The days when theyre alert and clear-headed make a caregiver hopeful. Then the bad days come, and family members and caregivers feel the pain of losing their patient and/or loved one all over again. This slow and normal progression of the disease makes communication a major challenge for caregivers.
This blog will share more information and advice to improve communication, including:
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 youd imagine. As the illness progresses, you may notice changes in these areas:
- Eating patterns, likes, and dislikes
- Continence or ability to control when they answer natures 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.
Do Try To Be Forgiving And Patient
Do not forget that dementia is the condition that results in irrational behavior and causes dementia sufferers to act the way they do. The patients demand plenty of patience and forgiveness from the people looking after them. Have the heart to let things go instead of carrying grudges around for something that the patient may not be in control of.
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.
Dont Answer Questions Of Patient/loved Ones Regarding Bad Memories
People with Alzheimer’s often ask difficult questions, mostly about people who have passed away years ago. Its not helpful to remind the patient and/or loved one that a person theyre asking about has passed away. Rather than avoid the subject, you can say, He/shes not here right now, but tell me about him/her. Often the person with memory loss is looking for the sensation and security that they would have if their loved one was around.
Caregivers and/or family members should be helping patients and/or loved ones comfortable, safe, and protected. Elderly women, for example, who have had children commonly ask, Where are my babies? This question will often come up at meal time, when feeding the children was an important part of motherhood. Find a way to soothe their concern. You could say, The babies are sleeping.
As stated earlier, trying to bring a person with Alzheimer’s the present-day reality is not effective. Caregivers and/or family members should adapt to the patient and/or loved ones reality. Its ok to go anywhere in any time period in order to communicate.
Stage 6: Moderately Severe Dementia
When the patient begins to forget the names of their children, spouse, or primary caregivers, they are most likely entering stage 6 of dementia and will need full time care. In the sixth stage, patients are generally unaware of their surroundings, cannot recall recent events, and have skewed memories of their personal past. Caregivers and loved ones should watch for:
- Delusional behavior
Caregiving In The Middle Stages Of Alzheimers Or Dementia
As your loved ones Alzheimers disease or dementia symptoms progress, theyll require more and more careand youll need more and more support as their caregiver. Your loved one will gradually experience more extensive memory loss, may become lost in familiar settings, no longer be able to drive, and fail to recognize friends and family. Their confusion and rambling speech can make communicating more of a challenge and they may experience disturbing mood and behavior changes along with sleep problems.
Youll need to take on more responsibilities as your loved one loses independence, provide more assistance with the activities of daily living, and find ways of coping with each new challenge. Balancing these tasks with your other responsibilities requires attention, planning, and lots of support.
Ask for help. You cannot do it all alone. Its important to reach out to other family members, friends, or volunteer organizations to help with the daily burden of caregiving. Schedule frequent breaks throughout the day to pursue your hobbies and interests and stay on top of your own health needs. This is not being neglectful or disloyal to your loved one. Caregivers who take regular time away not only provide better care, they also find more satisfaction in their caretaking roles.
Helping Patients And Their Caregivers Have Realistic Expectations
A patient with dementia and his or her caregiver may retain certain ambitions for the patient that he or she no longer can meet. The discerning psychiatrist can help both parties better understand the patient’s new limitations and aid in re-setting their expectations accordingly. Detecting and addressing newly emerging limitations in the patient is particularly important because cognition issues are not always obvious. For example, a patient with a substance abuse problem and/or human immunodeficiency virus infection brought about by drug-associated behavior, may no longer be able to carry out some related responsibilities due to poor memory and difficulty sustaining attention. In a case like this, it would be important for the caregiver to understand that this lack of attention to these responsibilities by the patient is due to the patient’s disease state and not to the patient’s choosing to do or not do certain things.
The psychiatrist should follow the same basic principle when a patient has dementia due to Alzheimer’s. The psychiatrist can advise the patient and his or her loved ones to generally take things one step at time, which allows them, as a team, to decide what to do and when to do it, one event at a time.
Coping With Changes In Behavior And Personality
As well as changes in communication during the middle stages of dementia, troubling behavior and personality changes can also occur. These behaviors include aggressiveness, wandering, hallucinations, and eating or sleeping difficulties that can be distressing to witness and make your role as caregiver even more difficult.
Often, these behavioral issues are triggered or exacerbated by your loved ones inability to deal with stress, their frustrated attempts to communicate, or their environment. By making some simple changes, you can help ease your loved ones stress and improve their well-being, along with your own caregiving experience.
Planning For The Future: Tips For Caregivers
Making health care decisions for someone who is no longer able to do so can be overwhelming. Thats why it is important to plan health care directives in advance. To help plan for the future, you can:
- Start discussions early with your loved one so they can be involved in the decision-making process.
- Get permission in advance to talk to the doctor or lawyer of the person youre caring for, as needed. There may be questions about care, a bill, or a health insurance claim. Without consent, you may not be able to get needed information.
- Consider legal and financial matters, options for in-home care, long-term care, and funeral and burial arrangements.
Learning about your loved ones disease will help you know what to expect as the dementia progresses and what you can do.
Other Treatment And Support
Supporting a person with vascular dementia to live well includes treatment for symptoms, support to cope with lost abilities, and help to keep up enjoyable activities. For someone who has had a stroke or has physical difficulties, treatment will also include rehabilitation.
The drugs that are routinely prescribed for Alzheimer’s disease do not have benefits for vascular dementia, and are not recommended for it. These drugs may, however, be prescribed to treat mixed dementia .
If someone is depressed or anxious, talking therapies or drug treatments may also be tried. Counselling may also help the person adjust to the diagnosis.
Talking therapies for people with dementia
Talking therapies give people the chance to speak in confidence to a trained professional about problems or issues that are causing them concern.
Develop Helpful Daily Routines
Having general daily routines and activities can provide a sense of consistency for an Alzheimers or dementia patient and help ease the demands of caregiving. Of course, as your loved ones ability to handle tasks deteriorates, youll need to update and revise these routines.
Keep a sense of structure and familiarity. Try to keep consistent daily times for activities such as waking up, mealtimes, dressing, receiving visitors, and bedtime. Keeping these things at the same time and place can help orientate the person with dementia. Use cues to establish the different times of dayopening the curtains in the morning, for example, or playing soothing music at night to indicate bedtime.
Involve your loved one in daily activities as much as theyre able. For example, they may not be able to tie their shoes, but may be able to put clothes in the hamper. Clipping plants in the yard may not be safe, but they may be able to weed, plant, or water.
Vary activities to stimulate different sensessight, smell, hearing, and touchand movement. For example, you can try singing songs, telling stories, dancing, walking, or tactile activities such as painting, gardening, or playing with pets.
Spend time outdoors. Going for a drive, visiting a park, or taking a short walk can be very therapeutic. Even just sitting outside can be relaxing.