It is a mistake to hide or be embarrassed about what’s going on.
The challenge of dementia is the unpredictability of the associated behaviours. Every case is different. And behaviours continually change as the illness progresses. As such, the caregiver must constantly be looking for new ways of managing situations as they arise.
Dementia is the ultimate challenge. Over time, caregivers can become adept at dealing with it. They learn ways to:
- Cope with the situation in creative ways.
- Become experts at caregiving.
- Negotiate positive outcomes.
- Reframe the relationship.
- Deal with emotional pain in different ways.
- Mourn the loss and changes in their loved one as time passes.
Caregivers must become adept at the process of elimination in determining the cause for changes in behaviour. Learning how to properly analyze circumstances and the patient’s reactions on a daily basis is a full-time job.
Watching a loved one work through the behaviours and stages of dementia as it advances can be very isolating, distressing and disturbing to the caregiver. Caregivers may see the patient experience three stages:
- First – anxiety.
- Next – suspicion, accusing, theft.
- Then – regression and difficulty recognize familiar people.
Talk about it
If your loved one has developed a difficult behaviour or you notice their behaviour is changing, you need to tell someone. It is a mistake to hide or be embarrassed about what’s going on.
You need to talk about it. It is also important to:
- Keep notes.
- Mention the behaviour(s) to family members .
- Make an appointment with your doctor.
What to do when you see changes
If you notice changes of concern in your loved one’s behaviour or memory it can be confusing to know what to do. Start here:
- See a family doctor first. Family doctors can assess the situation and recommend a specialist.
- Once aligned with specialists
- The patient, caregiver and specialists develop a treatment plan.
- The caregiver is part of the treatment plan
- It is very important to know you are not alone; there are resources in the community.
- If the patient has BPSD, the caregiver needs thorough education to become properly informed on how to deal with the behaviours effectively – to know what to do and where to go if/when the behaviours escalate or become dangerous.
- Within the community resources include specialized teams to deal with challenging behaviours of dementia patients. These teams will go into the home of the patient for the purpose of:
- Scanning the home environment to understand the conditions in which the person lives.
- Uncovering ‘triggers’ that may be causing certain behaviours.
- Assessing and noting what the actual behaviours are.
- Writing a plan to help the caregiver cope with their immediate situation.
- The preference is to use non-pharmacological interventions or strategies to minimize the behaviours and help the caregiver and the patient deal with behaviours effectively and quickly.
Family members and caregivers to a person with dementia need to be prepared. It’s not an easy road for anyone involved, so you will need support. Find someone who can be there for you.
Caregiver strategies for managing some behaviours
Learning how to respond, redirect or reframe situations or conversations is skill learned over time.
- Act – don’t react.
- Think before you respond to the behaviour.
- Understand why saying ‘No!” or “Please don’t do that” to a person with dementia will not work.
Meaningful visits are about quality of time. Reframing a conversation is very effective. Testing a patient’s memory is very stressful to them whereas reframing your queues can spark a conversation. Populate their memory with queues:
- Label photographs of family members.
- Don’t ask ‘who’s this?’ Instead say “That is your son, Nick.” or “This is a lovely picture of your granddaughter, Susan”.
- Keep your visits short, meaningful and positive.
- Do things to create happy memories.
- Don’t ask questions.
- Just ‘be there’.
Learning how to communicate and negotiate with someone who is changing all the time is hard work. It requires building a new relationship on an ongoing basis with the patient.
- Be patient.
- Speak clearly.
- Don’t raise your voice.
- Learn to manage your expectations.
- Keep visits short, positive and memorable.
- Begin your visit in a state of calm – not frazzled or rushed.
- Interact in such a way that the person understands what’s going on. Don’t be condescending.
- Large family gatherings may become overwhelming. Scale back. Try to personalize and keep noise and confusion to a minimum. Many short visits with individual family members may work better than one big one.
- Try using the recorded voice of a loved one (child, grandchild, spouse) to say “it’s ok Mom, it’s time to take your medication – let (the caregiver) help you.”
- Write a letter – the caregiver can read to the patient to calm them.
The art of persuasion
Get creative. If your loved one doesn’t want to attend a day program, you might suggest that they are going to ‘help volunteer’ at the program (rather than attend). If this solution makes the patient feel good about themselves and enjoy the program more, is it a bad thing? No.
If you’re getting resistance from your loved one about seeing the doctor, the answer may be as simple as having a grandson or granddaughter suggest that seeing the doctor will be good for them.
Watch this compelling caregiver series: A Caregiver's experience with BPSD: Peter's Story