How do I plan for the future?

Planning ahead when living with dementia is about empowering your choice and making decisions about your life in advance. This helps make things clear for those supporting you in your journey. It can be difficult, but it is good to plan ahead if you are able, as soon as you can. After you’ve had time to adjust to your diagnosis, here’s some next steps to take:

Talk story with people who you trust and who support you.

They may be your ‘ohana, your family members, your chosen family, close friends, and care team.Talk with them about what is most important to you and how you want to live. As an ‘ohana, talk about dementia and work together to plan for the future to ensure that you can continue to live well with dementia. It may take time for family and friends to accept and understand, but it’s important to not go through this alone. If you’re the caregiver, bringing together the ‘ohana may help them know how to support you too, so that you don’t have to carry all the care responsibilities on your own. Every family is different.

Complete an Advance Healthcare Directive

An important first step is completing an Advance Healthcare Directive, which identifies who you trust to help with your health care decisions and what kind of care you would want. This can only be done while you have the capacity to do so. You may also consider completing a legal financial power of attorney document and a Providers Orders for Life Sustaining Treatment form (POLST).

The Conversation Project Kit

It takes a village

When you talk story with your ‘ohana about your diagnosis, it can be helpful to talk through different roles. Everyone will have different understandings of dementia and different capacities to help. This will often change throughout the journey. Perhaps one family member or friend can assist with the day to day tasks, while another family member helps to manage the finances. Talking about it can help everyone to feel better and have clearer expectations. If you’re living alone, perhaps a trusted neighbor can check in on you often to see that you’re safe. Local social service organizations have programs that can provide support, case management, and guidance.

Financial

• Consider ways to make it easier to manage your money and invite a trusted person to be your back-up.
• Gather your important documents, whether hard copies or electronically, in a safe place known only to trusted persons close to you. These are things like info on your bank accounts, insurance, taxes, etc.
• Remembering a PIN number may become difficult, and so using contactless credit cards for tap-to-pay can be helpful.
• It might be helpful to set up limits on debit or credit cards. This can help to protect your funds, especially if you tend to misplace things often.
• If you have someone close to you who you can trust to help manage your finances, it can be helpful to add them as an Authorized User to your accounts. This may also allow them to help make payments for you, without transferring financial responsibility or opening a joint bank account.

More Information

Staying healthy and enjoying life

Staying active and social are key parts of maintaining quality of life and stimulating your mind.

It’s important to focus on the things that you can do, rather than the things that you can’t. Every day is a new day. Talking with your ‘ohana and friends about doing these activities together can support you to continue living well.

Stay social.

Communicating may become more difficult over time. Telling others what they can do to help can make it easier for them and you. It may be helpful to have conversations in more quiet environments with less distractions. It’s okay to ask people to repeat things and speak slower if it helps.

Exercise regularly.

Moving our bodies can help to bring healthy blood flow to the brain and boost our mood as well. Whether it’s going for a walk, gardening, dancing, or another exercise you enjoy, it’s important to stay active if you can. Talk with your health care provider before starting a new exercise routine.

Eat a brain healthy diet.

What we eat can fuel our bodies and our minds. It’s good to eat whole foods like vegetables, fruits, nuts, whole grains, fish and poultry. Emphasize nutrition, fiber, and healthy fats, such as avocados and olive oil. Limit the ultra processed foods, sugary drinks, and fatty red meats. Talk with those supporting you about ways to incorporate more whole foods into your diet.

Do what you love.

As human beings, we need purpose in life and joy in our day to day. Sometimes dementia can make it difficult to do things we used to love doing. So it’s important to find new things to enjoy or adapt our activities so that we can continue to enjoy them in new ways. Whether it’s listening to music, baking with family, or being out in nature with friends, keep finding the joy in your life. This shifts our focus to the positive and to the strengths we still have. Find meaningful activities to do together with those close to you.

Get good sleep.

Our sleep may change as we age and when living with dementia. If you can, try to get 7-8 hours of sleep. When we sleep, it gives our bodies much needed rest and may help the brain clear some metabolic debris from the day. Talk with those supporting you about what helps you sleep well and what hurts your sleep. These may be daily habits, parts of your environment, aspects of your health, etc. It can be helpful to establish a routine that supports good sleep hygiene.

Get your hearing and vision checked regularly.

Dementia can change the way our minds make sense of what we see and hear. We want to give our minds the best info possible, by wearing hearing aides if we need them or glasses if we need them. Call to schedule routine visits and set reminders to attend the appointment. It can be helpful to allow those supporting you to attend the appointments with you.

If you smoke, try to stop. If you drink alcohol, try to limit it to one drink a week or none at all.

These substances can damage our brains. We want to give the brain the ability to function as best as it can for as long as it can, and so stopping habits that hurt the brain is important. Talk with those supporting you about a safety plan to support you in reducing use and quitting.

Consider the different care options and resources in the community.

There’s care at home, care at a center during the day time, 24/7 care at residential care homes or foster homes and 24/7 care at nursing facilities. Everyone is different and everyone’s experience living with dementia is different. However, it can be helpful to consider the types of care you would be open to receiving if it could benefit your safety and quality of life. It’s also helpful to think about the types of care that your finances can afford and whether to prepare to apply for government assistance in the future. If you’re able, it’s helpful to talk with your ‘ohana about this in advance so that they know how to support you and honor your wishes.