MANAGEMENT OF DEMENTIA – CARE AND SUPPORT
The management of dementia discusses the needs of people in both the early and later stages of dementia, focusing on social and environmental aspects as well as physical and psychological. Living with dementia can have a big emotional, social, psychological, and practical impact on a person. Many people with dementia describe these impacts as a series of losses and adjusting to them is challenging.
This page aims to give people – and careers in particular – a better understanding of what it is like to have dementia (check on the link attached for further information). Management of dementia was discussed to help patients and families to overcome the negative effects of having the disease. It looks at ways to support someone to live well with the condition, based on that understanding. It also looks at how supporting someone with dementia can affect careers. Moreover, the importance of diagnosing early dementia and some recommended advice from Doctor Helena Chang Chui in encouraging patients for visiting doctors has been highlighted.
MANAGEMENT OF DEMENTIA
Treatment and management of a person diagnosed with dementia depend on the type of dementia and the stage of the disease. The management of dementia is not limited to the management of individuals and the disease, but must also include their personal and physical environment. This means that modern dementia services must understand the management issues in a variety of socio-cultural settings, and should identify the specific needs of people with dementia and their carers, regardless of their age, class, ethnicity, religion, sexuality, or incident disability (including learning disability).
DEMENTIA HAVE DIFFERENT NEEDS
People with dementia have different needs at different stages of the disease, and their management needs will vary accordingly. The main management tasks in early dementia are helping the person with dementia and their family come to terms with the diagnosis, optimizing the quality of life in the present, and planning for the future.
In later dementia we deal with maintaining person-hood, the emergence of behavioral and psychological symptoms of dementia, making decisions for a person who no longer has the capacity to do so for themselves, and end-of-life care in people who are increasingly frail and have limited ability to communicate their needs. Underpinning all of these is the need for respect and communication, and to provide person-centered and relationship-centered care for people with dementia and their careers.
THE IMPORTANCE OF DIAGNOSING EARLY DEMENTIA
Clinical evaluations, differential diagnosis, and management of dementia most commonly occur in the primary care setting, with appropriate specialist input as needed. When the behavior of someone close to you changes, finding out what the underlying cause is can seem discouraging. A diagnosis, however, can make a difference in your loved one’s quality of life.
The earliest stages of dementia are tricky to diagnose and identify. At times, the person seems completely normal. They can function physically, communicate, and they can care for themselves. But loved ones know differently. They can’t pinpoint what’s wrong, but they know that something is not right, and the person doesn’t always seem to be him or herself.
“Early dementia causes confusion and cloud rationality, making it much harder to negotiate a visit to the doctor.
THINGS TO DO WHEN PATIENT RESIST FOR CHECK UP
Helena Chang Chui, MD, chair, and professor of neurology at the Keck School of Medicine of USC and an internationally recognized Alzheimer’s disease expert has recommendations in this situation:
Mention the appointment informally, just before visiting the doctor rather than discussing it in advance. Because the dementia patient’s reality is altered, you can do this management. You have to use little half-truths, “You can say something like, ‘Let’s go out to breakfast and stop by and have our annual checkups.”
Use other physical problems as an excuse. Seeing a doctor for a knee problem is different from going in for memory loss.
Confront the topic, when you know the person is lucid. People with early dementia slip in and out of lucidity. Rather than exacerbate the problem when they are confused, gently bring it up, when they have a moment of clarity.
Avoid arguing. “You can’t argue with your loved one, because they don’t know what they are doing,” Chui says. As hard as it is, being generous and compassionate will have better results.
Schedule the appointment for “yourself” and ask your loved one to tag along. Tell them that having their support would be helpful. “We tell families that at times, you have to be a little bit of an actor, but that it’s for a good cause,” Chui says.
A caregiver or someone close should go to the appointment with the patient. This is not the time for the patient to go alone, since they might not be able to accurately report what is happening for them, and they may not remember what the doctor recommends.
THINGS TO REMEMBER
Remember that the patient’s perception of time and reality is different from yours. They may think that an event that occurred 20 years ago happened yesterday and arguing the point won’t help. “Someone with memory loss is not always grounded in reality.”As a result, caregivers must be savvy in their reasoning.
Additionally, there are things a caregiver can do to make the appointment go smoothly:
Prepare the doctor in advance. Call ahead, discuss your concerns, and ask for a memory screening. This prevents you from having to do so in front of your loved one.
Keep a journal. Document changes in personality and differences that you have observed in their daily routine and communication. Keep a list of questions you may have as well.
If you need consent, handle the paperwork at home. It will be easier to discuss it with your loved one then rather than when they are stressed from being at the doctor.
Bring in a list of current medications. This will help rule out any drug allergies and reactions.
Think ahead to how your loved one might react and be prepared. Bring distractions, such as snacks or an iPad, to keep them from focusing on being at the doctor’s office. If they tend to cry or get angry under stress, take someone with you who can go in first and notify you when you can go directly back to the doctor’s office.
Living with someone who has dementia is a new experience for all involved, but with understanding, patience, and giving them proper management there are ways to improve their quality of life – as well as yours.
SUPPORTING A PERSON WITH DEMENTIA
When supporting a person with dementia, it can be helpful for careers to have an understanding of the impact the condition has on that person. This includes understanding how the person might think and feel, as these things will affect how they behave, and knowing the proper management.
The person may be experiencing a world that is very different from that of the people around them. It will help if the career offers support while trying to see things from the perspective of the person with dementia, as far as possible.
Each person is unique, with their own life history, personality likes, and dislikes. It is very important to focus on what the person still does have, not on what they may have lost. It is also important to focus on what the person feels rather than what they remember.
EFFECTS OF DEMENTIA
However, dementia has many effects. Most people experience memory difficulties and problems with thinking.
These in turn may lead to the loss of:
- independence and autonomy
- social roles and relationships
- the ability to carry out favorite activities or hobbies
- Everyday skills of daily life (eg. cooking, driving).
- Despite all these things being lost, the person will still retain some of their abilities, and will still feel an emotional connection to people and their environment, even later on in the condition.
SHOW YOUR LOVE AND CARE
Caregiving can have positive aspects for the caregiver as well as the person being cared for. It may bring personal fulfillment to the caregiver, such as satisfaction from helping a family member or friend, and lead to the development of new skills and improved family relationships.
Each day brings new challenges as the caregiver copes with changing levels of ability and new patterns of behavior. As the disease gets worse, people living with Dementia often need more intensive care.
To help you determine when and how to provide suitable management and the most appropriate support to a person living with dementia consider these tips used by other care partners:
- Safety first: Is there an immediate safety risk for the person with dementia to perform this task alone? If there is no immediate risk of injury or harm, provide encouragement, and continue to provide supervision as necessary.
- Avoid stress: Prioritize tasks or actions that do not cause unnecessary stress for the person with dementia. For example, if you know that grocery shopping will be frustrating for the person with dementia, ask for their participation to outline a weekly menu, and organize a grocery list.
- Make a positive assumption: Assume that the person with dementia is capable of completing the task. If you sense frustration, try to identify the cause of the frustration before intervening. Focus on his or her current needs, rather than dwelling on the future.
THIS WOULD ALSO HELP:
- Create a help signal: Identify a cue or phrase that you can use to confirm if the person with dementia is comfortable receiving support. For example, you may agree to use a phrase like, “Is there anything I can do to help?” or a nod to signal that it’s ok to chime in if the person with dementia is having difficulty remembering a word or name.
- Talk it over: The best way to determine how and when to provide support is to ask directly. Ask the person with dementia what they need or the frustrations they may be experiencing. Talk about it, and then make a plan.
- Work better together: Find activities to do together and keep the conversation going about expectations for how you will provide support. Check-in regularly by asking the person with dementia if you are providing a level of assistance that is comfortable or adequate.
While every person experiences the early stage of dementia differently, it is common that a person in the early-stage may need cues and reminders to help with memory. As a care partner, it may be necessary for you to take the initiative to determine how you may be able to help. For example, he or she may need help with:
- Keeping appointments
- Remembering words or names
- Recalling familiar places or people
- Managing money
- Keeping track of medications
- Planning or organizing
Focus on the person’s strengths and how they can remain as independent as possible, and establish a strong channel of communication. Consider ways to work together as a team. For example, if they are still comfortable balancing a checkbook, you may offer to provide a final review.
Providing support to a person living with Alzheimer’s disease or related dementia is an ongoing and sometimes emotional process. As a care partner, you may be feeling overwhelmed by emotions that range from fear to hope. Emotions may be triggered by thoughts about how this diagnosis will impact your life, but also the anticipation of future challenges. Learning to recognize your emotions may help you move forward and help the person with dementia live the best life possible.
EMOTIONS THE PERSON WITH DEMENTIA MAY EXPERIENCE
Emotions such as fear and denial are common for both care partners and individuals living in the early stage of the disease. Being able to talk about these emotions together may help you both work past the difficult feelings and spend more time enjoying the present.
You can help the person with dementia to work through feelings of denial and fear about the disease by:
- Encouraging the person to share his or her feelings in a journal
- Spending time doing activities that are meaningful for both of you
- Attending an Alzheimer’s Association early-stage support group designed for both the person with dementia and care partner
- Talking to each other about your expectations, questions, and concerns
EMOTIONS YOU MAY EXPERIENCE AS A CARE PARTNER
- Denial. The diagnosis may seem unbelievable or difficult to accept. Short-term denial can be a healthy coping mechanism that provides time to adjust, but staying in denial too long can prevent you and the person with the disease from making important decisions about the future. It also can delay his or her ability to live a quality life. If you are experiencing denial about the diagnosis, your ability to help the person with dementia will be hampered until you can come to terms with the diagnosis yourself.
- Fear. Fears about the progression of the disease and the challenges in providing future care can be overwhelming and can prevent you from focusing on the present.
- Stress/Anxiety. Uncertainty about what to expect as the disease progresses and how to support the person with the diagnosis can lead to increased stress.
- Anger/Frustration. Anger towards the diagnosis is a common response to feeling a loss of control over the future. You may be feeling resentment about how your role as a care partner will impact your life.
- Grief/Depression. Sadness or a sense of loss over your relationship may also lead to feelings of hopelessness.
HELPING THE PERSON WITH DEMENTIA LIVE WELL
People with Alzheimer’s want to live well for as long as possible. The ability to remain healthy, active, engaged, and independent are consistent desires identified by newly diagnosed individuals. Care partners play an important role in helping a person with dementia achieve these goals.
Consider the tips below to help the person in early-stage stay healthy for as long as possible:
- Encourage physical activities. Based on the results of some studies, exercise or regular physical activity may play a role in living better with the disease. Choose activities you both enjoy.
- Prepare meals that maintain a balanced diet and are low in fat and high in vegetables.
- Create a daily routine that promotes quality sleep and engagement with others.
- Identify situations that may be too stressful for the person with dementia.
- Work together to find what helps the person relax.
TAKING CARE OF YOURSELF
Being involved in activities that enhance your sense of well-being may help reduce your stress level. Spend time with friends and family, eat well, engage in physical activity, and see the doctor regularly.
Here are tips on how to maintain your own health:
- Think about ways you can get support now. For example, include an afternoon to yourself in your monthly schedule. Ask others to visit or go to lunch with the person living with dementia while you’re away.
- Build a support network. Creating a support system before you think you need it will minimize your stress as the disease progresses. Look at current support systems you have already in place and consider the people you turn to most often in times of need.
- Connect with other care partners to acquire encouragement and comfort from others who understand what you’re going through. Learn more about in-person and online support groups.
- Ask for and accept help. Care partners often wait too long before asking for help from others.
- Rest when needed and allow time for yourself and your own interests.
- Try not to take things personally; symptoms of the disease can cause an individual to forget events or commitments. Remember this is not a reflection of his or her character.
- Stay healthy through diet, exercise, and regular visits to the doctor.
- Stay engaged by continuing to be involved in activities that are important to you and enhance your sense of wellbeing.
- Allow yourself the opportunity to laugh when funny situations arise.
GETTING EMPOWERED WITH INFORMATION AND RESOURCES
The more you educate yourself about the disease the more confident and prepared you may feel about the future and your ability to solve problems as the disease progresses in short you are confident enough for dementia management. Knowing what to expect and putting plans in place can be empowering for you and the person with dementia.
- Accepting the diagnosis.
As a care partner, you may accept the diagnosis before the individual living with the disease. While the individual living with dementia is the only person who can change how he or she feels about the diagnosis, you can share information and provide support to help with the process of acceptance.
- Understanding Dementia.
The symptoms of Alzheimer’s usually develop slowly and get worse over time, becoming severe enough to interfere with daily tasks. While the progression of Alzheimer’s disease can differ from person to person, it’s normal for a newly diagnosed person to want to compare his or her symptoms with others.
- Information on treatments and trials.
Treatments are available to help with symptoms of the disease. Combining treatment for symptoms with supportive services can help the person live a quality life for as long as possible. While these treatments address the symptoms of the disease, currently, there is no way to prevent, cure, or stop the progression.
- Planning for the future.
People in the early stage of the disease want to have a say in the decisions that will affect their life, including legal, financial, and long-term care planning. While these conversations can be difficult, including the person in the early stage of the disease in this process can be empowering for everyone involved. As their care partner, knowing the wishes of the individual can help you feel confident about the future decisions you will need to make on their behalf. The sooner plans for the future are established, the better prepared you and the person with dementia will be.
- Living alone.
With support and resources, many people in the early stage of Alzheimer’s live independently. If you are a family member or care partner for someone who lives on his or her own, stay involved. Call or visit often, and make sure the person gets the assistance needed, such as help with housekeeping, meals, transportation, bill paying, and other daily chores. Put home safety measures in place, and be aware of any changes that would indicate the need for additional supervision or care
Educating yourself about dementia and maintaining a positive but realistic attitude allows you to maintain an element of control as a caregiver. It can take the sting out of surprising challenges you encounter and also improve the care that you provide.
Alzheimer’s Society https://www.alzheimers.org.uk/
Alzheimer’s Associations https://www.alz.org/help-support/caregiving/stages-behaviors/early-stage