If you know or love someone experiencing dementia symptoms for any reason, you’ve had to make many tough decisions. When to have them stop driving, manage finances, and live alone are some of the biggest. But it’s also the myriad of small day to day decisions which also impact everyone involved. How we handle these makes a difference, not only for us and our loved ones, but also the general public.
Helping a loved one manage life while living with a disease manifesting in dementia is a long, often thankless, tiring, and frustrating role. The big milestone decisions are hopefully done while the loved one still has some moderate cognitive ability and awareness. But as the dementia and diseases progress, more of these big and little decisions get made along the way, including how to celebrate life.
This is a time of year when many family and friends gather to celebrate moms, graduations, and weddings among other events. Often the question arises about whether to include the loved one with dementia. Theories and opinions abound, but ultimately this type of day to day decision should be based on a few key factors. Above all, the well-being of the loved one with dementia should be forefront.
Here are a few factors to keep in mind when deciding how to include a loved one with dementia in celebrations.
- Is it safe? If the venue includes stairs or another physical barrier to participating, it may create more frustration and difficulties for your loved one.
- What’s the time frame? If it’s in the evening or another time of day when your loved one has increased confusion or behaviors, it may be best to decline. Additionally if it’s a lengthy event which could cause issues, it may be more beneficial to attend only a portion of the event if possible.
- Who’s in charge of the loved one? If the event is being hosted by the loved one’s primary caregiver, then another trusted friend or family member or caregiver needs to be identified to be in charge. This will increase everyone’s comfort level knowing the loved one’s needs are being addressed.
- Will it create frustration or unwanted behaviors? Change is very difficult for someone with dementia. The preparation alone can cause issues—different clothing, disruption of routine and forgetfulness. The event also has many barriers–new or additional people to engage with and remember, different food, drinks and venue etc. All of this causes stress which may lead to increasing dementia symptoms and diminished dignity of our loved one.
- Is there an alternative way to experience the event? Sharing a video or pictures, seeing those involved in the loved one’s own environment before or after the event and/or even live videos can make our loved ones feel involved even if not physically present.
While life-changing decisions often serve as milestones of a journey, it’s the day to day choices which have the most impact. Keeping our loved one’s dignity, safety and well-being at the forefront will always make these choices a bit simpler. Typically hurt feelings about missing out or judgement can interfere with making sound choices. But it’s important to stay as objective as possible and focus on what’s best for our loved ones.
While never easy, these small choices influence all those who love someone with dementia. Weighing all factors will not only allow us to advocate for our loved one, but also create awareness of dementia’s impact on everyone involved. Ultimately, we want everyone to make memorable moments, including those with dementia.