No one can live with dementia alone. Not the person with the diagnosis. Not the care partner. We need people in our lives, willing to be with us in times of trials and triumphs. We need a care team, a community, and a support system. Our care teams are more than medical professionals, they are also made up of ordinary people, and friends, working in professions not actively involved in dementia care. They are people already in our lives, and people we specifically seek out. Who is on your care team? Who is missing?
Over the last 31 days on social media, I have recommended a few people that I don’t often see on the generic list that comes up in an internet search or care organization flyer. This list does not include medical professionals, that is something you should build with your primary care doctor as it is crucial the medical care team works together! Here are a few others you might want to think about adding.
Fellow Care Partners or Individuals Living with a Diagnosis
We are by nature social beings, and even the most introverted amongst us need companionship, to see us. By inviting someone also walking this dementia journey, you find someone with common ground, who likely is seeking something similar to what you are seeking. Our care team does not always need to be medical or clinical, our care team can also include those who will sit with us, see us, hear us, and understand what we are going through.
It can include someone who shares with you but also allows you to give.
Spiritual Director (Can also be Clergy or Religious)
Our faith and spiritual life are just as important as our physical and mental selves. Having a spiritual director for yourself and your loved one who is your care partner or has the diagnosis will help you live fully alive with dementia. A spiritual director is not a clinician, mentor, or coach but accompanies you throughout your life, including life with dementia.
Creative Arts Therapist
I am going to be fully honest and say not everyone will NEED a therapist or creative arts therapist on their care team. A controversial statement, I know. But true. We overstate the clinical care in our senior living communities and in dementia care. Suddenly everything becomes therapy. An artist who leads a program is suddenly called an art therapist. A program in the arts has therapy tacked onto the end of the program name. We only hire licensed creative arts therapists as actives directors – oftentimes when they are completely wrong for the job. These tendencies both diminish the quality of care we can provide and restricts the work a CAT can do to support those on the dementia journey. And, while I feel a vast majority of CATs are grossly undertrained in dementia with a stigmatizing view of what their role can be, they still deserve a place on our teams. As artists and therapists they are equipped with an ArtBin that can guide us through moments when our mental health and dementia overlap. They can help us rediscover our relationship with loved ones and transform it into what it can become. For that reason alone, we should consider inviting them to join our care team.
This will be an individual or organization that knows the ins and outs of dementia care in your area. They can help you to select an in-home care organization or care community, direct you to resources, and maybe offer support groups or education and social events. This member can help you find the medical and clinical staff you need. Their role on your team is to ease the stress and unknowns of the logistics of care. Find someone that can answer the questions of care, not from a sales point of view, but from a relational point of view.
Handyman, Cleaning Team, Landscape Hand
Luxury and Cost are two words that have been said when the idea of this potential member comes up. Often quickly followed by questions of trust and reliability. Understandable. But, when you find someone you can trust they can play an important role on your team. As someone living with dementia or a care partner, the maintenance needs around the house don’t stop when dementia enters our lives. Our ability to accomplish basic tasks diminishes due to changing physical needs and time, yet the tasks still need to get done. For this very reason, we must have on our care team someone who can help us out with the basics of home maintenance. To address the idea that it is luxurious and costly – it doesn’t have to be, and in most cases, it is cheaper than hiring in-home care staff, respite care, and even the cost if you were to injure yourself while doing something around the house. So, find someone for your care team, have their name and number on hand, and even if you only call them once during your dementia journey, the peace of mind will be well worth the work of finding someone to join your care team.
Personal Trainer or Physical Therapist
When we take care of our mind and emotional self, do we also take care of our physical self? As someone living with the diagnosis and as care partners, we know that we can live better if we also make sure we stay limber, of healthy weight, and can keep moving. To the best of your ability, find someone who will help you understand how to take care of your movement. This can be a personal trainer, a physical therapist or even a dance movement therapist can help (thus combining two members of our care time into one person) and if the services are out of reach financially, still have a name in your Rolodex and explore the free offerings in your area and on film.
Support Group Facilitator
I encourage you to have a support group facilitator on your team. Or, it can be the information for an active group. Support groups are not for everyone. And not all support groups work for everyone. However, to know of a local group, to know those who facilitate a group that fits your personality, your needs is something you should have in your back pocket for you never know when you might need it or can share that information with someone else who has recently been diagnosed or is a new care partner. It is an act of building a community that seeks to accompany each other.
Dementia Care Professional
A specific person who is not medical, not clinical, and not a member of your family or close friend group who can accompany you as another set of eyes and support. A dementia care professional is someone that can be the glue to your care team, helping you fill spots you see, making suggestions, helping you live fully alive, advocating for you, and helping you discover new ways of living that still magnify your purpose, your dignity, your joy. This person may also fill the care navigator role but doesn’t have to be the same person. If you are at a loss for who could be this person for you, may I raise my hand? I can be that person on your care team, supporting you, coming in to help you walk this dementia journey as a support role or key player.
This is in no way THE list. You know your needs best and should discover the freedom to explore the people you want on your care team. My only hope is that you have one. We are communal people and dementia can try to strip that from us, so let us do what we can to create a community where a community has been lost, and invite new people into our lives to help us live a 3-dimensional life, wealthy in community and support. Care team members can be paid or free, they can be deliberately invited, or organically show up. Who is on your care team? Did I miss someone that others should know about?