When a dementia diagnosis comes, we often don’t know what to expect, much less how to respond.
This guide helps you prepare for what can be a long and difficult care journey, providing simple, step-by-step advice to help your loved one be happier and healthier, for longer.
When my mother-in-law was diagnosed with Alzheimer’s 5 years ago, we were all heartbroken and scared. My wife searched far and wide for resources to help support her mother, and manage her own needs.
And I supported her and her mother as they struggled to adapt to this new reality. It was through this experience, and knowing that we were not the only ones going through it, that we built a solution that could help care partners and those living with dementia to stay connected, stay healthier, and stay more autonomous, for longer.
This was the birth of Simon, a mobile app to give a single place to those living with dementia, and their family members and caregivers, to stay on top of schedules, coordinate important tasks like medication refills and doctors appointments, and track movements in case someone goes missing or loses their way.
There is no cure-all for the pain, stress, and difficulty of dealing with dementia. But with innovative tech solutions like Simon, and some basic planning and care management, we can reduce anxiety and increase autonomy for everyone affected.
-Daniel Brown, Simon Co-Founder
#1: Update and Centralize All Essential Documents
Conversations about finances, living wills, end-of-life care, and preferred treatments are always difficult. But it is much better to do this while your loved one is still lucid, and to do so before a family finds themselves grieving.
Furthermore, important documents like bank cards, passports and ID documents are better updated as soon as possible, so as not to leave someone experiencing cognitive decline vulnerable to being without them.
Gather all essential documents: Make sure your loved one and other key caregivers know where essential documents are, and that they are safe.
Sit down with the right people: Whether a doctor, banker, attorney, insurance rep, or family members, make sure the right people are up to date and aware of any needed changes.
Agree on a way forward: Have honest and frank conversations about what your loved one wants and needs going forward. Agree on it in writing and make sure the right people are aware and on board.
Be wary of scammers: People with dementia are particularly vulnerable to scammers and opportunists. Take precautions to protect them from being targeted, and be vigilant about approaches from new “friends”, “sales people”, or other potential threats.
There are many unknowns about the care journey for someone living with dementia. Taking care of the essentials in the early days can provide more predictability, and save a lot of future pain.
#2: Establish a Support System
You’re not alone in caring for your loved one. When the diagnosis comes, it feels like a very unfair, unjust event.
It is imperative to have a support group and know that you have a network to lean on in times of need, whatever those needs may be.
Communicate the diagnosis with the right people: Let the people close to you know what you are going through, and the changes that they might experience as a result. We do not always know where help will come from, so communicate the diagnosis with those you are close with.
Ask for help when needed: People will not always know what you need from them, and asking for help can be uncomfortable. Don’t be afraid to ask people when you need something, whether it is a friendly meetup, a check-in on your loved one, or someone to accompany your loved one to an appointment, outing, or engagement.
Do not isolate yourself from others: In difficult times it can be natural to believe that no one understands what you are going through, or feel that you do not want to burden others with your problems. So make sure you are addressing your social needs by connecting with others.
You may not know who has gone through, or is going through, something similar. Identify people you can trust and rely on, who will want to help, and let them know about what is going on in your life.
#3: Prioritize Health and Wellness
Dementia can have a severe impact on an individual’s ability or willingness to engage in basic healthy behaviors, including eating, exercise, sleeping, hygiene, and importantly socializing. Furthermore, studies show that social connectedness can slow the progression of symptoms in people living with dementia.
Prioritizing basic health and wellness can improve longevity, happiness, and autonomy for everyone affected.
Set up regular socializing points: Talk to friends and family about meeting up regularly with your loved one, so that they stay connected and socially active. Weekly lunches, dinners, and other social outings can be life-changing for everyone involved. Encourage their friends to keep reaching out, and encourage your loved one to do the same.
Organize for nutrition: Make sure there is always ready-to-eat food in the kitchen, take your loved one out for meals, and check in to make sure they are eating what and when they should.
Establish regular check-ins: A daily call, a twice-a-week stop in, or finding “excuses” to just drop by are critical. These regular check-ins are integral for staying on top of the basics and emergencies alike.
Decrease major stress factors: Every care partner of someone living with dementia has a story about an oven, or toaster, or some major appliance that scared the bejeezus out of them, until they finally unplugged it, or threw it out. Identify the major scare and stress factors related to dementia symptoms, and decrease them as much as you possibly can.
The little things that keep those your loved one happy, healthy, and autonomous can extend healthy periods by an outsized degree. The more we can engage ourselves and our loved ones in staying active, the better we will all be in the long term.
#4: Develop a Care Coordination Plan
Ensure efficient care, reduce stress, and improve the quality of care for your loved one with a comprehensive plan that outlines the roles and responsibilities of everyone involved in the care process.
Assign Roles: Clearly define roles and responsibilities for each caregiver to avoid overlaps and gaps in care.
Regular Updates: Schedule frequent meetings or updates to keep everyone informed and adapt the plan as needed.
Flexible Approach: Be prepared to adjust roles and responsibilities as the needs of your loved one change over time.
Utilize Digital Tools: Leverage care management tools like Simon for scheduling, medication tracking, and communication among caregivers.
Emergency Plan: Include a contingency plan for emergencies, ensuring everyone knows what to do in unexpected situations.
With a well-crafted care coordination plan in place, you can foster a nurturing and stable environment, bringing peace of mind and improved quality of life to both you and your loved one with dementia.
#5: Utilize Care Management Tools
There are many tools out there to help coordinate the care of your loved one. Using them can reduce friction between loved ones and concerned individuals, as well as increase the autonomy and well-being of the individual living with dementia, and those affected by it.
Decide what you need: The needs of someone living with dementia vary from person to person. Find out what your loved one’s major needs are, whether it is getting from point A to point B, staying on top of nutrition or medication, socializing, or responding to emergencies.
See what is out there: There are not many tools designed specifically for people living with dementia, with people deploying anything from analog white boards to entire smart homes.. There are also various support mechanisms, from employee provided benefits to health care plans and non-for profit support networks.. Based on your needs, see what is out there.
Pick it and stick with it: Change can be difficult as symptoms progress. It is important to stick with the tools and habits you choose early on, so that you are not confusing or hurting the confidence of anyone using the tool. It is often easier to work around limited tools than to work around constant change.
There is no one tool that will make this care journey seamless, and reduce all pain and anxiety related to dementia.
But care management tools can help cut friction between loved ones, and provide more autonomy to individuals living with dementia.
#6: Leverage Technology for Safety and Routine
Description: Similar to care management, there is plenty of technology out there to support keeping people living with dementia safe and in their routine. Use this technology to decrease care burden and improve autonomy.
Find pain points: Are you worried about medication, wandering in the night, getting lost on the way to an appointment, leaving the oven on? Identifying these pain points is the first step to leveraging the right technology for you.
Identify the tech: Smart pill dispensers, mattress monitors for sleeping, internet-enabled ovens, doorbells with cameras…there are many options out there to alert you to nearly all parts of your loved one’s routine. Find which ones work for you, and stick with them.
Stay in touch: Remote monitoring can make us feel safer and less anxious, but it’s no replacement for human contact. Stay in touch with your loved one, even when you know they are safe.
The worst case scenarios are often the first ones we worry about. Try to use existing solutions to help prevent those scenarios from arising for as long as possible.
#7: Seek Emotional and Mental Health Support
Dementia takes a toll on everyone. Do not neglect your own emotional and mental health in dealing with the disease. Find a support group or a professional to help you navigate this very difficult time.
Be open about your needs: You may not feel that you have any needs. You may feel selfish or guilty for needing support when your loved one is suffering from the disease. Try to understand your stress and energy levels and how to optimize them.
Ask others about their experience: There are many people out there who have gone through what you are going through. They will have lessons, advice, and things they wish they knew. Don’t be afraid to ask. Social media can be a great place to seek advice and support as well, with millions of people engaging on Facebook Groups every day on the topic of dementia and care.
Don’t be afraid of acknowledging the truth: It is hard, painful, and unfair. No one deserves this. Acknowledging that dementia is difficult for everyone involved can go a long way in finding how to best take care of yourself.
You can only be good support to someone else if you are taking care of yourself first. Caregiving can have serious consequences on the wellbeing of the care partners, do not forget your own health and happiness in this journey.
SIMON helps decrease stress and increase autonomy through our through our three primary features:
An interactive map, with location tracking and geo-specific notifications, so that you know where your loved one is, and where they should be
A calendar linked to the map, so that you get notifications for new appointments and missed appointments
A task list, to help everyone stay informed and on top of the essentials
We combine these features into one central location, so that no one is alone in getting from point a to point b, staying active and social, or keeping the cupboards stocked with essentials
Simon is here to help you and your loved ones manage the basics of your dementia care journey, so that everyone can spend less time worrying about emergencies, and more time on happiness.
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