Dementia and Future Planning: What You Need to Do Next

Dementia is a terminal illness that changes not only the patient. Friends and families suffer too. It is tough to see someone whom you’ve known all your life become a different person because of this syndrome. Things we expected from them in the past are probably no longer possible. A funny father who used to have jokes for almost every occasion becomes dull. He no longer sees the lighter side of a situation.

The main victims of dementia are a person’s memories and their ability to decide for themselves. The brain finds it hard to tell real from fake. This shows up in ways like hallucinations, in seeing or hearing things that their brains make up. They believe more in false, fixed beliefs that are absolutely untrue, as a result of confabulations.

Where the brain should be able to process what’s before them to aid the person’s decision-making, it shuts down. Instead, it fills in the blanks with made-up stuff. And to think that it gets worse.

This is why planning is paramount. It can literally save your life as the family carer, and you will be able to give it freely to save the life of the patient.

The following sections of this guide will show you how to plan and what to plan for.

Consider the Options Available

Prior to making the necessary plans, think about the patient care options that are available. Include friends or family. It's okay not to have everything figured out. However, let there be a plan.

Questions like these should be considered before taking any drastic action: 

• How would you care for them 24/7?
• What choices do you have? 
• Do you move them into your house? 
• Will you continue to work? 
• Can you afford not to work? 
• Is there health insurance that covers care for them?
• What if they are confused and think they need to go home, but they are where they have lived all their life? 
• What does “home” look like for them even after the diagnosis?

A lot of heartaches can be avoided just by planning ahead. This information would aid in designing a care plan that meets their requirements without compromising your health as well.

Navigating Communication and Honest Conversations

There’s no way to make communication with a person living with dementia less troublesome. So many emotions are going to come to the fore. Still, it is something you must do to help them live normally..

Here are tips for starting conversations:

• Choose a calm, familiar setting

Establish routines and create a supportive environment. This will facilitate effective communication. There are many different stages of dementia. At some stages, most caregivers will find it difficult to have a sense of their world. They will most likely become frustrated at different times. Try your best to be patient. If they mention something isn’t right, refrain from correcting. It's most likely going to confuse the patient even more. Nod, don't contradict.

• Reassure them that they’re in control

The tip is to never argue with them or contradict them. It's hard trying to change their mind because they can just get upset. They want to go to work? Sure. Select the clothes with them. They will forget in a bit. It is pointless arguing with them. The goal isn’t to have them be agreeable at all times but to reach a resolution that they’ll be happy with. Dementia care is not about being right, but being kind.

• Limit distractions while talking to them 

Make sure that there is nothing to distract the patient. While having a conversation, turn off the TV or radio, or any other devices that are distracting. Get rid of stuff that could divert their attention. 

• Use nonverbal signs and talk in a natural tone

Do not speak to the patient in a high pitch or get in their face. Be as calm as possible. Get their attention with a gentle touch instead. Calling them by their name works perfectly, too. In order to connect with the patient, use nonverbal clues like eye contact and facial expressions. This is important.

• Focus on one thing at a time

Take topics one after the other to avoid confusing the patient. While communicating, remain connected and mentally present. This concentration ensures the patient maintains their line of thought on the subject matter.

• Focus on simple conversations

Learn to keep conversations short and simple by breaking information into smaller chunks. Do not repeat statements. Instead, rephrase them. Do not jump in when the patient struggles to find a word. They will be confused. Patiently wait for them to remember the word, giving them subtle hints here and there, like repeating familiar words or names. This helps build the patient’s familiarity with these words or names.

• Be Creative

You need to be creative in meeting their resistance or frequent confusion of reality. For example, a retired patient may insist on leaving for work because that used to be their life. This could mean they are not engaged enough. Create tasks to keep them busy. 

• Never lose your patience

Another understated victim of dementia is a person’s ability to control their emotions. Mood swings are at an all-time high with dementia patients, and it can be very difficult to deal with. If you didn’t know this, now you do. And now that you do, learn patience. This is important if you want to be able to communicate with them in any capacity, whether it's to call them to the dinner table or to get them to say hi to their loved ones on a video call. Use active listening. Consider everything they say. And act on their requests as long as they do not compromise care. Avoid arguing or talking back. Instead, learn what triggers emotional change and interpret their responses and attitudes to certain situations.

• Recognise that your role as a caregiver is vital

Interacting with a dementia patient will have some good and bad days. As a caregiver, be as supportive as possible. Even on the bad days. The patient relies on you for comfort, emotional, and mental support. Therefore, learn to listen and communicate with them truthfully.

Legal Planning: Securing Decision-Making Rights

The capacity to make wise financial and legal decisions may deteriorate as dementia worsens. Early legal preparation guarantees that decisions are made on their behalf. Don't wait too long. The mind is tricky. And when their mind isn’t sharp, the loss of control causes lots of wrong ideas.

Here are two ways to get legal action:

1. Power of Attorney (POA)

A power of attorney gives someone the legal right to make decisions for a person with special needs. This can involve handling money, making decisions about medical care, and handling legal issues.

There are two sections of a POA: Health care and financial welfare. This makes it possible to keep the lawyer updated on the client's health and care requirements and take action on their behalf. The POA will have the same authority as the person. Here’s more context on the two sections of a POA:

• Health and welfare 

This covers all the health care required, from medical treatment to living arrangements, choosing doctors, deciding on specific treatments, and consenting to or refusing medical interventions.

• Property and financial affairs

The other section covers the money aspect. This gives the POA access to the person's accounts and assets. The POA can then control these if the person loses the capacity to manage these themselves. It covers bills, pensions, and bank accounts.

2. Wills and Advance Care Plans

Making or updating a will ensures the person’s estate is handled as they wish. Preferences for medical treatment are documented in advance care plans and advance decisions.

Financial Planning for Dementia Care

As a family carer, you’re most likely going to have to quit your day job. This is already an expensive cost of your loved one’s dementia care. Then, when you factor in medications, therapy, nutrition requirements and so on, it becomes scary looking at your budget sheet. Making a plan in advance guarantees your loved one's desires are honoured. It makes you feel at ease about care, finances, and housing.

Here's what to consider:

• Day-to-day expenses

Carefully evaluate what they would need daily, from medications to groceries, especially if you’re on a budget. Do their grocery shopping and laundry. Keep food that they can cook for as long as possible. Buy frozen dinners, microwave-ready oatmeal, fruits and sandwiches, etc.

• Consider residential care costs

Investigate the residential homes. Study their services. Check reviews. Are the basics covered? Is it clean? Are the residents clean? Is the staffing adequate for the number of residents? Do they engage with the world through daily activities? Are there people in a similar place in their dementia journey, so your loved one has a community they can relate to? If yes, find out how much things cost there and decide based on the findings.

• Accessing government support or NDIS 

The Government of Australia has the wonderful National Disability Insurance Scheme (NDIS) to cater to the needs of people under 65 years old who are living with disabilities. Dementia falls under this category, so you should check out what they have to offer. But, if your loved one is above 65, they could also find a way to squeeze them in. You have to consult with your loved one’s GP to see if it’s possible. The NDIS will fund part of the patient’s personal care needs, among other things.

Types of Support for Dementia Care

Imagining the type of care that may be required is not always simple. However, establishing a plan guarantees more seamless transitions in the future.

These are types of support to explore:

• In-home care

This is personalised support delivered at home. Traditional and cultural activities are organised to keep your loved ones engaged and to help them socialise. Support workers can also provide you with different kinds of services, including personalised care, transitional care, respite for family, calming interaction, high-quality assistance and more. This type of dementia care support is great for patients because it operates using the elements of their own turf, which settles them faster than other types of care. It’s especially helpful in the early to mid stages when the patient still recognises their environment.

• Community programs

If you cannot afford to have a support carer over, sign your loved one up for dementia community care programmes. They are all around you. These programmes have activities like reminiscence therapy, sensory stimulation, and simple games to jog the memory. The hosts are also very intentional because they adapt each activity to each person’s interests and skills. This type of dementia care support is like killing two birds with one stone; bird one being exercise, and bird two being daily engagement.

• Residential care

This is for when the dementia has progressed to the point that the professionals have to step in. This means that your loved one will live out the rest of their dementia struggles in a home. The professionals at residential homes have access to a wide range of tools and services they can deploy to make your loved one’s life easier. The residents are also often engaged, so that their brains don’t succumb to dementia. If you’re looking for the best care home for your loved one, Support Network can help you find it.

Documenting Wishes: Holding on to What Matters

Never has a person’s preference for a certain type of food, music, sports team, television serial genre, or even flowers been so important as when you receive a dementia diagnosis for them. These can become the only anchors that can keep them grounded in reality as the syndrome slowly chisels away at their sense of self.

To help your cause as the carer:

• Encourage them to participate in their favourite activities

From favourite foods and activities, to faith or spiritual needs, to who they want involved in care decisions. Find out what brings them comfort. Do this by making your loved one's surroundings enjoyable. Let them soak in the present. 

• Keep them engaged and happy

Acts like placing cosy chairs close to the windows so they can safely view the outside world tend to work wonders for people with dementia. While some patients might be scared or nervous around new people or situations at first, this helps reduce anxiety. Put out snacks regularly. As their memory deteriorates, dementia patients frequently experience hunger, hence the need for snacks. Provide stimulating books or magazines from the library for reading selection purposes, instead of just TV channels.

• Find old shows or sit-coms with songs and dance

Music and dance are very simple and not mentally demanding. Make a playlist of their favourite songs from their early years. Play extremely simple games. They still may need help, but it will excite them greatly. Gamify something that’s a normal adult activity, and watch their face light up with joy.

Emotional and Practical Support for Carers

One of the most compassionate things is caring for someone who has dementia. It's a journey of sacrifice. Of love and patience. It can be emotionally taxing and solitary. That’s why carers need care too. 

• Understand the Emotional Toll

It feels like losing a loved one as you watch them change due to dementia. This process is sometimes called “ambiguous loss”. This is frequently misinterpreted and emotionally complex. As you care for someone who has dementia, it's normal to feel a variety of emotions, like burnout, guilt, and frustration. You are not a bad person because you feel these emotions. It only means you’re human. Getting professional or peer support can make a world of difference.

• Look After Yourself

Join a support group online or locally. Other carers understand exactly what you’re going through. And sometimes, the best medicine is simply being heard. Support groups allow you to share your story, learn from others, and find encouragement and relief. You can find carer support networks through Facebook groups, forums, or local community health centres.

• Speak with a mental health specialist

The health of caregivers is also important. See your doctor on a regular basis. Inquire about counsellors or psychologists. Get access to career coaching or mental health care plans. Basically, hook yourself up with community-based services that support carer well-being

• Take Time Off When You Need It

Respite care is not a luxury, but a necessity. Everyone needs rest to continue giving their best. You can opt for in-home respite care where you have a support worker come over to help care for your loved one while you rest or attend to other aspects of your life. Another option is to look for care centres where your loved one can stay briefly to give you some space to do other things. This tends to make a world of difference.

A Support Network That Makes a Difference

Carers often juggle everything from appointments to medications. Sometimes, they do household chores and financial admin for their patient, all while managing their own lives. This can lead to burnout. Support Network helps lighten the load by offering:

• Help finding reliable carers or support workers

Whether you require ongoing help or sporadic assistance, we put you in touch with skilled, sympathetic experts who know dementia like the back of their hands.

• Connections to community services

Be it transportation, meals, cleaning, social outings and anything else, we will find the perfect support worker for you. That’s sure to improve your daily life.

• Guides for every stage of the dementia journey

Our team arms you with the necessary information for the next phase, because informed carers are empowered carers.

Conclusion 

After a dementia diagnosis, future planning is more than just paperwork. It's ensuring that your loved one is catered to in a way that honours their wishes, values, and dignity. You do this with careful preparation, candid discussions and the right form of assistance.

The important steps for preparation following a dementia diagnosis are outlined in this guide. It also captures information on the legal and financial side of things, and pays special attention to how you set up care and look after yourself as a carer.

Let Support Network walk alongside you on this journey. We want to help you connect with compassionate carers, find practical solutions and give your family the confidence to face what’s ahead together.