We’ve all got ideas for what needs to be done to improve care for persons with dementia. Words and phrases such as “quality of life,” “person-centered care,” “support,” and “increase awareness, reduce stigma” are fortunately fast becoming not just words and phrases but real, tangible, cultures of care. From family to professional caregivers, to caring for someone at home or entrusting your loved one to a care facility, people are demanding—and hopefully receiving—the quality of care we all deserve.
Of course, we’ve still got a long way to go. A culture of care is also a culture change, and one that needs to be ubiquitous.
So I asked the community of caregivers on our Dementia Care Facebook page: What’s the number one thing you’d like to see to improve long-term care for persons with dementia
? As one person commented, “Sometimes I want to climb the highest mountain and yell, "Isn't there a doctor out there that cares? This is my mom, not just a number!”
Here are some of their hopes and experiences:
- Approach with love and kindness.
- Treat them as adults and not children, with love and integrity.
- Remember they are people first, not a disease!
- Love, patience, and a sense of humor and dignity.
- Focus on the current day and what you can do to brighten their day.
- Be lovingly understanding.
- Focus on what remains; don’t focus too much on what’s gone.
- Calm and security, routine and engagement.
- Quality of life!
- Great love for them beyond the disease.
- Respect and individuality.
- Just stay in their moment where they are with love and respect. It is worth every second.
- We need more love, patience and understanding than l have ever needed in life. It's such a sad thing to see someone you love being lost in his memory. Today was rough, yesterday good. Hopes for tomorrow.
- Once so much of language is stripped away, there is an essence of what it is to be human that remains. This concentrated essence is there to teach the rest of us things we are too talkative and too busy to know.
- Preserve dignity. Listen even when what's being said doesn't make sense; respond to what was said, even if it doesn't make sense to others. Show affection and comfort on good and bad days. Dangle the carrot to get him/her to do what needs to be done, such as bathing. Loving, kind words are more effective than harsh, angry words.
- Always remember they may not know you but you still know them. Love them as you always have…they will not be here tomorrow.
- Keep on loving them—no matter what.
You can join the conversation here
. Also, take a moment to bookmark Improving Long-Term Care
, which explores five ways long-term services can make life better for persons with dementia.