An excellent article was recently released by USAgainstAlzheimer's and Mayo Clinic that highlights the vital role our caregivers play in dementia care. We know how important caregivers are, and we are excited to see them getting the attention they deserve in articles like this.
They proposed seven "best practices" for engaging caregivers in treating those with dementia:
- Build rapport with the caregiver as well as the patient
- Acknowledge the caregiver's role, and assess their capacity to be the caregiver
- Talk directly to the person with dementia, but also allow the caregiver separate time to share concerns
- Improve provider knowledge and ability to communicate their knowledge to caregivers
- Assess caregiver needs and provide resources for support
- Coordinate care between members of the healthcare team
- Train providers in how to resolve conflicts between caregivers and the person with dementia.
Some of these best practices seem readily achievable: building rapport, acknowledging and giving the caregiver space to talk freely, making sure the provider is well trained and can coordinate care with a healthcare team. These are skills that most healthcare providers have, or can readily achieve.
The other best practices are important, but, in my opinion, most primary providers will likely need help from a support team to do them justice: assessing the caregiver's capacity to care and caregiver needs and helping resolve conflicts between the caregiver and the person with dementia. Don't get me wrong, those are IMPORTANT goals, but these goals also take more time or require a set of skills of the provider that not all primary doctors will have. This is where nursing staff, social workers, psychologists, and neuropsychologists can come in. This is also an important part of our work with our new caregivers in the HABIT Program. (Don't know about HABIT? Click here to find out).
The input we get from our caregivers when a person with dementia is no longer able to communicate all of their needs is essential. We also have to realize as providers that our patients don't exist in some blackhole or isolation: there are very often people going through this disease with them. We need to take care of those caregivers as well so that they can help us care for their loved one with dementia.
Connect with other caregivers caring for people living with dementia in the Caregivers: Dementia group on Mayo Clinic Connect.
See the Mayo link to the article summary here:
The need for healthcare providers to engage Alzheimer's caregivers
If you want to look up the full article, this is the reference:
This is excellent and once again reminds me how lucky we are to have HABIT and all of Mayo's HABIT team in our lives! If I had to pick my #1 wish in this list it would be that the provider allow me, as the caregiver, separate time to share concerns privately. There are so many times that I don't want to bring up something that might be upsetting to my husband OR I need a fuller explanation and I'd rather have it privately... I don't think I have ever seen one health care provider that allowed time to talk to me privately about my observations or concerns. I've learned to use the portal freely to share my concerns and observations and to ask for information.
From all of the talk about Habit here, I so wish that I could participate but the only way I might is if I'm ready to fly some distance for it. If I had the time which I currently don't, I would try to find the equivalent of a Habit in NYC. At any rate, I think what Debbra says here about time for the partners is so important. A rationale, for working with the partners, if it were needed, is that doing so further helps the person with MCI.
Hi @barbb, HABIT is a fantastic program offered by Mayo. I realize that geographically that means it is not accessible to everyone. However, I'm glad that you are able to benefit from the blogs posted by the HABIT directors here. I also encourage you to connect with other partners caring for someone with MCI or other form of dementia, several of whom have been through the HABIT program, like @debbraw. Please follow the Caregivers: Dementia group, join the discussions, ask questions. We'll get you connected. https://connect.mayoclinic.org/group/caregivers-dementia/