A dementia diagnosis unfortunately still holds a stigma for many family caregivers. They don’t want people to know about the dementia in their family or worry about what others might think if they were aware.
For that reason, family caregivers may begin to shy away from their usual events, social circles and time spent out in the community — things they enjoy in life.
Many seniors are being diagnosed earlier in the disease progression, when they can offer their opinions and desires about how they would like their life to take its future course.
These seniors want to know about their diagnosis and have opinions regarding how they want to interact with their community, how active they want to be, and what things they look forward to engaging in while they can and even after their memories begin to fade.
They are sharing these decisions with family caregivers.
Seniors with dementia are deciding if keeping the secret and not participating in life is what they want to do for themselves and their family caregivers.
There are ways family caregivers can continue to enjoy their lives as we live and care for a person with dementia. We should continue to be active participants in the larger community, not only to stimulate our senior with dementia but also to give them opportunities for physical activity and socialization.
Besides, we all just want to have fun living life to its fullest as long as we possibly can and know our loved ones are doing so as well!
Strategies for Smooth Family Outings
There are things we can do to make our outings go smoothly when they include a senior loved one with dementia. If they are smooth, we may decide that we can take our senior loved one out more often, which benefits everyone!
We can do a bit of planning before the activity, because how we prepare ourselves and our senior with dementia can make the day easier.
Here are some strategies you can use when you take your senior out for the day (or longer!).
- Ask them where they might enjoy visiting and, if they can’t think of a place, suggest one or use pictures to trigger a memory of past enjoyment
- Take small steps if you are unsure how they will react, such as planning a brief outing and building up to more lengthy trips
- Activities – bring something to keep them busy for a few minutes, distract or calm them
- Don’t forget snacks and drinks, maybe even a meal, especially a good meal if what is served is not acceptable and you plan to be out longer than a few hours
- Pack medication that might be needed while out so no doses are missed or forgotten
- Bring a sweater or jacket to help them stay warm; an umbrella or sunscreen to handle weather
- Lap blankets can make a real difference
- A book or puzzle can help pass the time if you will be waiting
- Pen and paper for notes or just doodling provide a ready-made activity
- Don’t forget a camera (or smartphone) to capture the memories for everyone
- Carry emergency phone numbers in case of emergency (if not already stored in smartphone)
- Bring along extra clothes, including undergarments, socks and a pair of shoes in case of accidents of any kind
- Ensure the senior carries a phone or other GPS locator if there is any chance of wandering; SatNav technology uses Google map to locate missing person now being trialed in UK
- Medical alert bracelets can be valuable, as it contains their personal information including health record and contact info via a personal ID number on the bracelet
- Have your senior loved one carry an ID in their pocket with your contact info and their address in case they get lost
- Plan to get in and out of store quickly and don’t dawdle if time is of the essence
- Know where you are going and learn the ins and outs of the location so you can navigate more easily and be aware of excessive noise or too many stairs, which might make that location a less than optimal choice
- Frequent stops for the restroom should be planned, determine where they are ahead of time
- Pick the time wisely, which time of the day works best for your senior – morning, afternoon, early evening
- Help them feel safe in any new surrounding; picking familiar locations work best
- Avoid going alone, bring a family member or friend for support, hand holding and extra eyes
- Clear the way, prepare for your outings with the staff and people you come in contact with so next trip is better; make the effort to increase awareness of communicating with person with dementia to help next time
- When visiting a business, talk to them as you arrive and ask for a quiet table or to serve you with more speed (it may take telling them your are traveling with someone who has dementia); perhaps a sensory garden or memory café would be a good option
- Constantly give verbal cues and reassurances to keep seniors calm
- If agitation or distress occur, be ready with your exit strategy to return home where senior feels safer
- Relax and have a good time!
Dementia Friendly Communities
More and more cities and businesses are requiring personnel to be trained to work with people with dementia.
Dementia-friendly communities are those that allow a person with dementia to participate fully and gain a meaningful experience.
Unfortunately, many caregivers and people with dementia do not feel supported and accepted within their communities. This confidence in their community decreases as dementia progresses.
35% of people with dementia go out once a week or less and 10% report they go out less than once a month. Hopefully we can turn that around.
So what does it take for our communities to become more dementia-friendly?
10 Features of a Dementia Friendly Community
There are things our cities can do to include people with dementia and their caregivers in the life of the community. By incorporating these features into the city — its infrastructure, businesses and mindfulness of the people, they will make it easier for someone with dementia and their caregiver to feel valued and included.
There are many examples of dementia-friendly communities in the US and the UK and many more are taking action to become more inclusive.
In order to be considered a dementia-friendly area, these 10 keys points must be met:
- People with dementia are involved, community should know the needs and desires of its citizens
- Increase awareness of dementia among the members of the community to reduce stigma
- Activities should be inclusive
- Acknowledge contributions of those with dementia in the community
- Healthcare system works toward early diagnosis and person-centered care
- Emotional support and services that engage everyone
- Support those with dementia in every home setting whether own home or care homes
- Available and reliable transportation
- Physical environment is easily navigated without barriers
- Businesses are respectful, recognize person with dementia and are trained to help appropriately
No one wants to feel like a burden. A person with dementia does not want to burden their family members. Family members don’t want to burden their friends. Neither want to feel like a burden to their communities.
The reality is that gaining knowledge, empathy and respect for those caring for and diagnosed with dementia can improve all our lives!