As a caregiver, you can't be expected to be an expert in medicine. You are, however, the best expert about your loved one's particular care and comfort. And when someone with dementia is hospitalized, hospital staff need your expertise as much as you need theirs (although some of them don't always realize this at first).
The following four tips can improve the quality of your loved one's care:
4 things to do
1. Do: Spend as much time at bedside as you can.
By sticking close to your loved one's side, you can be a reassuring presence in a stressful and unfamiliar situation. Hospitalization's chaos and loss of familiar routines is disorienting to someone with dementia; both the situation and health issues can increase confusion.
Your loved one might forget where he or she is and why; you can gently orient as to place and purpose: "We're in the hospital because you fell down and got hurt."
By staying close, you're also in a better position to monitor your loved one for pain or other needs and convey information to medical staff. And, in turn, you can answer their questions and be an advocate for your loved one. If you can't be there, consider exploring other options.
2. Do: Share with hospital staff your tips about what works to soothe your loved one.
You know better than anyone what works and what hinders effective communication with and cooperation from your loved one. Don't be shy about offering suggestions:
"She doesn't like to be called by her first name."
"He's more cooperative after a snack."
"She really likes listening to music on the iPod, if that's all right; I think it will calm her."
A diagnosis of dementia should be there in the person's chart, but orderlies, nurses, the person with the meal menus, and others in the large cast of participants in hospital care won't check everything in the records every time. So issue quiet reminders of this if the staffer doesn't seem to realize. You could even post a sign on the door: "Reminder: Mrs. Jones has moderate dementia." Your loved one won't see it, or overhear you, and the staff will appreciate the gentle prod.
More caregiver do's and don'ts when someone with dementia is hospitalized
3. Do: Convey information about symptoms and pain.
One of the most important contributions you can make is speaking for your loved one. Jot down when you notice unusual symptoms or expressions of pain, so you can let the doctor or nursing staff know: the time, the circumstances, what you observed. Your loved one with dementia may not remember an incident by the time he or she is next asked.
People with dementia are not accurate reporters of their own symptoms, even if they act like they are in front of staff. Many people with dementia still have the ability to bluff or brush aside questions, especially about pain and symptoms.
4. Do: Make sure your loved one has glasses, dentures, hearing aids, and other helpful devices.
Your loved one's glasses, hearing aid, or dentures may be removed during procedures or sleep, and he or she may then forget to ask about them later. Yet not having glasses, dentures, or hearing aids can add to the person's confusion and fear.
Make an extra effort to keep track of these devices.
And one thing not to do:
1. Don't try to micromanage the medical care.
It's tempting to want to control every aspect of your loved one's hospital experience. But not only is this unfeasible, it can interfere with good care.
What you can do:
Ask the nurse(s) going off duty what needs to be done during the next shift in terms of tests or other care. Check in with the new nurse(s) about these same things.
Ask the doctors questions about what's being done and why. Remember that your loved one will be seeing many specialists. It's a good idea to jot down questions in a dedicated notebook as they occur to you.
Ask to have unfamiliar terms explained to you. You have a right to understand everything that's taking place.
If you disagree with treatment or have concerns about how things are going, ask for a second opinion. For most patients with dementia, a geriatrics consultation (with a geriatric specialist) can be helpful. Or you can ask to speak with a hospital advocate or member of the hospital ethics committee.