Caregiver Insights
Caregiver Suggestions
Your Loved One’s Wish List
Happiness is rooted in our relationships. As Brené Brown said, “Connection is why we’re here; it is what gives purpose and meaning to our lives.” People with dementia crave happiness and connection as much as any of us, but the progressive illness creates barriers that make their ability to connect increasingly difficult. While we cannot fully grasp the confusion, loneliness, and sadness they feel as their awareness declines, here’s what they would ask from us most of all.
We want our lives to be as normal as possible. We want to be comfortable, respected, and feel loved and cared for. It all comes down to safety, dignity, presence, feelings, communication, and physical contact. Please try to understand our concerns.
Safety
Losing our memories and ability to think clearly has put us in a scary place, filled with loneliness and uncertainties. We don’t like being dependent on other people, but we know that there is no way we can regain control over our lives. Our most pressing need is to know that we are safe from harm. Anything you do to reassure us that we are secure will reduce the stress in our lives.
Dignity
Our behavior may have changed, and our words may have gone away, but our core values, feelings, and need for love and companionship remain as strong as ever. Realize there is a difference between who we are and how dementia is causing us to behave. Please treat us with dignity and respect. Speak to us, not about us. Ask us what we would prefer to do, rather than telling us what we are going to do. Know that there are times we need the privacy of being alone. Our minds may no longer function as they have in the past, but we are adults, not children, and we want to be treated appropriately.
Presence
There is a difference between being in the same room and being in the same space. Just being in the same room with people we care about can create a sense of comfort, but we feel a deeper, emotional connection and sense of gratitude when you smile and make eye-to-eye contact with us. Presence is not about doing more; it’s about being actively engaged in the moments that already exist. If our reality is different than yours, allow us to take the lead. In most situations, who is right doesn’t matter. We may see things differently than you do, but we are most comforted when you accept us and the reality we are living with. When you bend to this wish, you show us you care.
Feelings
Maya Angelo discovered that “people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” We may forget who you are and your name, but if you give us moments of joy when are together, we will associate you with happiness and goodness. When you approach us with a positive attitude and remain sensitive to our needs, we feel better. We love it when you create laughter, help us build self-esteem, and do not criticize us.
Communication
Don’t worry about being with us all the time. What matters is that we have moments of true connection when we are together. How something is said is more important than what is said. Think about how your words will affect our moods. Speak with warmth and understanding. Our minds don’t work as fast as they used to. When you move, speak and respond at a gentler pace, it allows us to get connected. Slowness itself is a form of compassion. Don’t stand over us and look down on us. Smile, get on our level, and be an active listener. Laughter is a language you can use to strengthen our bond. We enjoy hearing stories from the past that are familiar to us, and please ask us to retell stories you know we like to talk about.
Physical Contact
Appropriate physical contact can produce healthy and meaningful connection, but what is appropriate depends on the individuals, our relationships, and our moods. Please be cautious. Handshakes, holding hands, hugging, neck and shoulder massages, and brushing hair all have their time and place. When we are feeling lost and alone, appropriate touching can bring us comfort and relief. When inappropriate, physical contact can be offensive.
A Final Thought
We wish we were more adept at creating and maintaining connection with you, but despite our limitations we want you to know how much we crave it. Please meet us with empathy and presence because connection is enriching for us all.
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