“We desperately need the healthcare sector and the community to support us to live beyond the diagnosis of dementia….If you offer us proactive, rehabilitative and enabling post-diagnostic strategies for the disabilities that result from the symptoms of dementia, we can live better lives and the pathway of loss, despair, and a focus on our deficits will be reduced. We need to be enabled, not further disabled.”
Kate Swaffer and John Sandblom
Board members of Dementia Alliance International living with dementia.
The time following a dementia diagnosis is when most people gather and try to process information. Many perceptions and expectations about living with dementia are formed during this time. Learning how to be proactive fosters feelings of empowerment that, in turn, helps to build a problem-solving mindset and resilience that are vitally important for well-being and supporting a meaningful life while living with dementia.
Negative thoughts and emotions can harm your body. On the other hand, positive thoughts and emotions have beneficial effects, including:
The following are recommendations from others living with dementia and their care partners of actions that are enhancing their lives
- Keep your spirits up. It is easy to fall into a pattern of feeling sorry for yourself and having a negative outlook on life. Attitudes are free so choose a positive one. Find ways to stay positively focused. One person, for example, changed the ringtone on their phone to a favorite song so every time the phone rings they are reminded of something happy.
- Maintain a caring support network. Spend time with people who make you feel good about yourself and see the upside and humor in life. Sometimes people may want to ‘over help’ or take over doing things for you. The action and activity of doing things, however, is good for you mentally and physically. Gently tell others ‘over helping’ you would rather do it yourself but perhaps with a little support from them.
- Seek out interesting and meaningful things to do. Doing things that are interesting and meaningful to you is not only fun but also healthy. There are endless things to do, such as doing something new such as painting, meeting a friend for coffee, going to a nearby park, and walking around your neighborhood. One person took up pottery and found much pleasure and a sense of accomplishment in making things.
- Engage with others who are living with dementia. People living with dementia and who have learned ways to live with and accommodate the symptoms are a valuable resource. By sharing what has worked for them, and sometimes as importantly, what has not worked, they can be a significant source of support and encouragement.
- Think of ways to accommodate changing abilities. There are an infinite number of ways to accommodate changing abilities to reduce stress and frustration and support independence. It’s helpful to talk with trusted people in your life who can help you think creatively about ways to manage changing abilities. Learning accommodations from others living with dementia can be a helpful source of ideas.
Here are several examples
- Laurie can put together outfits to wear at home but cannot manage this cognitively when traveling. When she needs to travel, she puts all the parts of an outfit together on one hanger and then packs the hangers intact. This removes the stress and frustration of putting outfits together when she is away from home.
- Brian cannot remember to put his keys in the same place when he gets home. Instead of searching all over for his keys the next time he needs them, he tells Amazon’s Alexa where he is placing his keys when he gets home. Then when he needs the keys he asks Alexa, “Where did I put my keys”.
“Knowing that changes in my life were going to be inevitable, I decided to spend time where I could be accepted, challenged, and grow. Thankfully, I have several different support groups, groups of friends, and people with special interests. Being part of a caring network means I am able to make a positive impact by listening and speaking with others.”
~ John Wood, living with dementia
Living with dementia is a stressful experience. It is easy to become isolated with your thoughts and feelings. Staying socially engaged and connected with others is beneficial in so many ways. The strongest social connections are those shared with people who care about your well-being and happiness.
Talking with others who are living with dementia has unique benefits. Whether it’s expressing your fears and concerns or receiving helpful advice, connecting with others who have dementia can make a huge difference to your experience.
“Dementia does not define who I am. It is a small part of the many facets that comprise my life. I am Laurie Scherrer and I am a wife, a writer, a scuba diver, an educator, and an advocate. I’m a traveler and a mentor. Oh, and I am also living with dementia.”
~ Laurie Scherrer, living with dementia
People receiving a diagnosis of dementia are often told by the physician to, “Get your affairs in order and return in six months for monitoring”. Many physicians believe there is little than can be done since there currently are no medical cures for dementia. There are, in fact, many things that can and should be done. Research shows that eating nutritiously, getting a good night’s sleep, reducing stress, maintaining strong social connections, getting daily exercise and movement, having a proactive, problem-solving mindset, and being engaged in stimulating and interesting activities are very beneficial.
People with early symptoms of dementia are becoming valuable educators and helping to increase understanding about the lived experience. Their first-person perspectives and experiences provide informed and beneficial information. Their missing voices on advisory panels, conference presentations and other avenues that inform policies, practices and research continue to fuel misperceptions about living with dementia.
The disability movement’s –“Nothing About Us Without Us” – is also applicable to dementia.