August 26, 2020
By: Rachel Wonderlin, MS, Dementia by Day
I wrote this a few years ago, but just added four more “things” to my list. If I get dementia, I’d like my family to hang this wish list up on the wall where I live. I want them to remember these things. The original list was also published in my book, When Someone You Know is Living in a Dementia Care Community.
- If I get dementia, I want my friends and family to embrace my reality. If I think my spouse is still alive, or if I think we’re visiting my parents for dinner, let me believe those things. I’ll be much happier for it.
- If I get dementia, don’t argue with me about what is true for me versus what is true for you.
- If I get dementia, and I am not sure who you are, do not take it personally. My timeline is confusing to me.
- If I get dementia, and can no longer use utensils, do not start feeding me. Instead, switch me to a finger-food diet, and see if I can still feed myself.
- If I get dementia, and I am sad or anxious, hold my hand and listen. Do not tell me that my feelings are unfounded.
- If I get dementia, I don’t want to be treated like a child. Talk to me like the adult that I am.
- If I get dementia, I still want to enjoy the things that I’ve always enjoyed. Help me find a way to exercise, read, and visit with friends.
- If I get dementia, ask me to tell you a story from my past.
- If I get dementia, and I become agitated, take the time to figure out what is bothering me.
- If I get dementia, treat me the way that you would want to be treated.
- If I get dementia, make sure that there are plenty of snacks for me in the house. Even now if I don’t eat I get angry, and if I have dementia, I may have trouble explaining what I need.
- If I get dementia, don’t talk about me as if I’m not in the room.
- If I get dementia, don’t feel guilty if you cannot care for me 24 hours a day, 7 days a week. It’s not your fault, and you’ve done your best. Find someone who can help you, or choose a great new place for me to live.
- If I get dementia, and I live in a dementia care community, please visit me often.
- If I get dementia, don’t act frustrated if I mix up names, events, or places. Take a deep breath. It’s not my fault.
- If I get dementia, make sure I always have my favorite music playing within earshot.
- If I get dementia, and I like to pick up items and carry them around, help me return those items to their original places.
- If I get dementia, don’t exclude me from parties and family gatherings.
- If I get dementia, know that I still like receiving hugs or handshakes.
- If I get dementia, remember that I am still the person you know and love.
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January 29, 2019
For someone living with dementia, restlessness and fidgeting are common behaviours which have long been associated with agitation or stress. Together with Dementia Advisor for Alzheimer’s Society Judith Bower and UCLan Senior Graphic Design Lecturer Jane Souyave, Active Minds have been working towards creating an activity to help alleviate fidgeting and repetitive movements.
Conversing with carers of people living with dementia, the teams realised that these restless and repetitive motions were not always negative and wanted to dispel the thoughts that fidgeting is a disruptive behaviour.
Funding from the Alzheimer’s Society and UCLan’s Innovation funds have allowed the teams to work together and raise awareness surrounding communications and connection techniques for people living with advanced dementia. The ‘Positive Connections’ group was formed and worked tirelessly to come up with a concept which would later advance in to a product – the Fidget Widget.
What Is Fidget Widget
An age-appropriate activity, Fidget Widget comprises of five different handheld tactile tools which have been specially designed to help keep hands both relaxed and busy. The different tools can be interacted with in a variety of creative ways such as spinning, sliding, twisting, turning or rolling.
The variety of actions have been shown to not only keep restless hands busy, but also improve dexterity and provide stimulation and engagement as the activity is both meaningful and fun.
Fidget Widget is not just an individual activity however, it has been shown to be beneficial in both group and singular settings and is a brilliant way to get carers involved.
The Fidget Widget tools have undergone a two year testing period whereby the families of people living with dementia were supported with communication techniques using the Toolkit. The incredible feedback from the families showed the positive effect these products have had for their loved ones.
Interacting with the Fidget Widget has been shown to help enhance a persons psychological wellbeing as it provides an outlet for restless hands whilst being a meaningful and engaging activity. The creation of this product has allowed a wider understanding of restless behaviours and the ways in which we can interact with people living with dementia who may have verbal communication difficulties.
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November 19, 2018
Christmas can be a very overwhelming time for someone living with dementia. A sudden influx of friends and family can cause individuals to feel stressed, agitated and confused. Active Minds outline their top tips for supporting your loved one through the overwhelming Christmas period, whilst ensuring you enjoy a magical festive time together.
This will help the day run as smoothly as possible, ensuring that both you and your loved ones enjoy the festivities without a hitch.
- Create a schedule, ensure celebrations are planned for earlier in the day to avoid tiredness or agitation.
- Speak to friends and family in advance about plans, and make sure everyone works together to ensure elderly members feel included and part of conversations.
- It may be a good idea to familiarise extended family members with any behavioral changes that they may expect to view in the person with dementia.
- A person with dementia can find large groups intimidating so keep invitations to a minimum.
- Familiarise you loved one with the guests in preparation for the event, talk about them and show pictures of everyone who will be coming.
- Have a quiet room set up where your loved one can go if things become a bit too much, with some activities that can help them relax.
- Plan some simple family activities and games that are inclusive to all generations.
Eating and Drinking
Food and drink plays a big part of Christmas. It’s important to think about eating and dietary requirements for elderly relatives as rather often older party members may have particular needs.
- Those with dementia may struggle to eat for many of reasons, such as a lack of appetite. So it’s best to avoid overloading their plate with Christmas Dinner, as this can be a daunting prospect.
- Keep alcohol to a minimum to avoid arguments or accidents that can agitate a person with dementia.
- Try where possible to serve food that is familiar to your loved one as this will help them feel comfortable and relaxed and may even spark memories and conversation.
- Sometimes people with dementia experience problems with vision. To avoid confusion, place colour-contrasting rugs in front of doors or steps to make sure they are visible (dark coloured rugs may be mistaken for holes).
- If the house is unfamiliar to your loved one, place labels on doors to help them move around easily.
- If possible, limit access to places where injury could occur, such as kitchens or staircases.
- Keep a list of emergency contacts nearby.
- If staying the night, leave lights on in case your loved one gets confused if they get up during the night.
Take time for yourself
Caregivers often struggle trying to balance Christmas plans and looking after their loved ones, meaning it can be an incredibly stressful time of year, so you must make sure you take some time for yourself.
- Pace yourself and set realistic goals so you don’t overstretch.
- Assign another member of the family to also be on hand to ensure that your loved one is ok and comfortable, so the job isn’t entirely your responsibility.
- You may want to have a respite care plan put in place to begin shortly after the festivities have ended. This would ensure to give yourself a well-deserved break.
- Be proud of yourself – Christmas can be a tough time for both a person with dementia and their carer.
If you have an elderly relative or friend that’s not spending Christmas with you, regular phone calls can help elderly people not feel isolated or lonely. Although this can be a very busy time of year, try and make time for a visit, even if it’s only brief, as this will be hugely beneficial for them.
Of course, it wouldn’t be Christmas without the giving and receiving of gifts. Choosing gifts for people with dementia isn’t always easy, so we’ve put together a few ideas which make the perfect present.
- A DVD of a classic film or TV series from their past, the film may help to spark memories.
- There are jigsaw puzzles available which are created especially for someone with dementia, including illustrations which can encourage reminiscence and conversation, perfect as a stimulating gift.
- Make a memory book or photo album full of special times spent together. Not only will you be creating something that you can enjoy with your loved one, this will be a reminiscent gift, that your family member can pick up and look at any time they want.
- Giving your loved one a board game to enjoy with everyone is a great gift. Active Minds have developed special dementia friendly games such as Animal Bingo and a specially adapted version of Snakes and Ladders.
- Colouring books are a relaxing activity to help a person unwind and focus, as well as giving a sense of satisfaction once the colouring is completed.
Activities are one of the most effective ways to keep people with dementia calm and content over the Christmas period, visit Active Minds to take a look at their resources and activities suitable for those with dementia.
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October 11, 2018
By: Darleen Mahoney
You’ve heard the term Sundowners syndrome. Are you a caregiver or know someone with dementia or Alzheimer’s that has sundowning? It is a neurological phenomenon that exists with those suffering from a form of dementia or delirium. Sundowning seems to be more frequent in the middle stages of Alzheimer’s disease and mixed dementia.
What causes this syndrome is believed to be caused from the inner “body clock” of the brain that signals when you’re awake and when your asleep, this breaks down in people with Alzheimer’s. There may be specific triggers in your loved one, taking notes to understand these triggers is a good idea.
Factors that may aggravate Sundowners Syndrome:
- Shadows and low light, causing fear
- Separating dreams from reality
- Infection, more commonly a UTI
- Low Lighting
- Unfamiliar environment
Sundowning isn’t a disease on its own, but it is a variety of behaviors that typically occur at a later time of day and may go into the night that affect people with dementia and Alzheimer’s disease. Those with sundowners are confused, experience anxiety, ignore directions, and potentially show aggression. They may begin to pace or wander.
There are steps that you can take to help manage this challenging time of day as it seems the fading light is the trigger, but the symptoms can get worse throughout the night. As a caregiver, this can be frustrating and exhausting for you. The steps you take will help keep your loved one safe, but also help them reduce their Sundowners symptoms.
- Have a regular daily routine
- No smoking or alcohol use
- Limit sweets and caffeine to the morning
- Smaller meals at night, larger meals at lunchtime
- Avoid late day naps
When it is time to go to sleep, take extra steps to provide a quiet relaxing environment:
- Close curtains and blinds, shadows are a huge problem
- Fix the room temperature to their liking
- Keep the house quiet, noise can make them paranoid
- Especially a visible television with the flashing lights and noise
- Put on relaxing music
You may also consult with your loved one’s physician about Melatonin at night time and any other recommendations that they may have.
You have tried to keep your loved one that is experiencing Sundowners quiet and relaxed, but they are still getting up and they are confused, and you are unsure how to respond.
- Do not argue with them
- Tell them everything is OK, be reassuring
- Let them get up and move around, just stay close to them making sure they are staying away from stairs and anything used to harm themselves
- Remind them what time it is and that its nighttime or bedtime
- DO NOT physically try to restrain from walking around
- Above all….STAY CALM
You may want to consider purchasing a baby monitor to be aware when they are getting up in the middle of the night.
As a caregiver with a loved one with Dementia or Alzheimer’s it’s such an emotional, physical, and time-consuming journey that Sundowner’s is just another piece of a puzzle to this disease that will never truly fit together and make any sense to most caregivers. Taking take to take care of yourself will only make you a better caregiver for your loved one, there is help in the form of support groups in your local areas and The Alzheimer’s and Dementia Resource Center offers support as well. Its also important to get away and have time for yourself, its important to have a well trusted Home Health provider that allows you time away to decompress and refocus so that you can be a better caregiver.
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