Dementia care is provided by people who are paid staff (including all types of health care providers) as well as family, friends, volunteers and neighbours (to name a few). In dementia care, we provide many different types of support and care.
"Care" can include anything from helping with household tasks to addressing basic social needs (e.g. a phone call or chat) to helping with tasks of daily life (such as getting dressed or finding the toilet). Quality care requires a commitment of both time and energy — and CARE.
It is interesting to note that in some countries, such as the U.K. and Australia, those who provide paid or unpaid support and care would be referred to as a "carer" rather than caregiver. The term "carer" is far more reflective of the caregiving role — placing a focus on "caring" rather than tasks. The word "carer" also brings out the emotional side of care, which can be a contributing factor/underlying root cause of compassion fatigue.
Think about it: if you "care," you may also find you are chronically tired, or quite frankly exhausted. The "care" you provide undoubtedly includes a mix of physical, mental and emotional expenditures of energy. You may be expending far more energy on caring than you realize. In your quest to help others, are you taking time to care for yourself? Do you understand why you are exhausted? Do you take time to replenish what has been depleted?
There is often too much to do, not enough time.
If you are connected to the world of dementia care, the demands are many. There is often too much to do, not enough time. Also, in many cases, you may be supporting someone with dementia who may not understand that he/she needs your support. Some people may actually resent you for trying to assist them, as they do not understand they need help. This is a difficult situation — because you are not only working hard to help — you are not appreciated for doing your best to provide the finest help and care possible. An expression of appreciation needs to come from others, as many people with dementia do not have the insight to know you are doing a great job.
To top things off, staff may have a heavy workload after they leave their work day and family may be sandwiched between generations and have a multiplicity of demands and responsibilities. If either or both situations apply to you, you may not be getting the help and support you need to balance the "giving" scenario. When you care, you can easily deplete your energy reserves. It is important to recognize that the losses and challenges experienced in dementia care can lead to a build-up of unexpressed emotions. Compassion fatigue is real! It is therefore vitally important to remember to care for those who care. But how?
- When caring for people with dementia don't take outbursts personally. The dementia brain is responsible — not the person. Find the strength to say, "I care." And then calmly carry on or walk away when you know the person is safe and can be left alone.
- Whether you are a staff member or a family member, be kind to yourself. If things are hard — admit it. Hold a pity party if you need to. Then embrace the love that comes from knowing you are doing your best.
- Share your feelings: Share your feelings with others, especially when caring feels thankless. Support fellow "carers" (either paid staff or family members). Remember, the days are long and the rewards are too few. Pause and take time to deal with the emotions that may erupt along the way.
- Family carers need to be sure to find someone to talk to throughout the journey, especially each time they witness further decline in their loved one's abilities, and again when a loved one passes away.
- Staff need to be sure to find support when those in their care engage in responsive behaviours, decline and/or pass away. If no one at work will listen, find someone who is not associated with your place of employment and "vent away."
- Validate your feelings: Validate your feelings by acknowledging that there are times that "this is really, really hard." It isn't easy to deal with frailty, responsive behaviours or death. Find ways to vent and share your feelings, frustrations — and losses — with someone who will VALIDATE how you feel. Help others to understand how important it is for you to talk — without being judged. And in turn, help those who need the same.
- Grieve: When those in your care die, take time to grieve the loss.
- For staff, there is often an urgency to move on and get the next person into the empty room. It is important to take a few minutes (or more) to feel any sadness that you are pushing below the surface. Like an onion, the layers will build and when peeled back you may feel the sting.
- For families, you may feel guilty when the burden lifts or you may feel broken and sad, or you may feel anything and everything in between. Loss is never easy. Allow yourself to grieve.
- Staff should work together to find creative ways to add fun to the daily working experience. A high five in the hallway, a "mystery gift" for being caught caring, a "take a break, I'll do that," a random act of helping, or whatever you can come up with to add cheer to your day, will help to replenish reserves. Create a culture of thanking fellow care providers for what they do.
Dementia care has many ups and downs. Celebrate the successes — and remember to validate the feelings that come during the losses that are encountered along the way. Let me end this blog by sending a "shout out" and a "thank you" to all of you who support those who are living with dementia. Thank you.