11 tips for staying independent with dementia

A sunflower with each of the 11 tips in the article written on one of its leaves

This is an extract from a post by DementiaWho.com. We are grateful to DementiaWho for sharing it with us and hope it will help anyone who has recently received a diagnosis of dementia, or is supporting someone who has. 

You know, that old adage: use it or lose it, well that applies particularly with dementia. The ability to stay independent with dementia for as long as it’s safe to do so is key in fighting this cruel disease. I’ve seen it with my mum with Alzheimer’s, when she stopped walking fearful of falling (one of the first signs for her) and how that led to confidence issues in her abilities and it began the start of her decline.

A dementia diagnosis is only the beginning of this new life, things will change but staying independent is important. It’s important for someone with dementia to set boundaries, to have their wishes respected but also have the ability to listen to others when the time is right.

Here are some tips to help you stay independent living with dementia.

1. Make Plans for the future

Thinking about the future is tough, but it is an important step in staying independent with dementia. Now is the time to put in place the legal, financial, health and lifestyle considerations you want. It’s best to do this at the earliest possible opportunity once diagnosed if you haven’t before. It allows you to express your wishes, choices and preferred options. It reduces stress for you in a sense as you have offloaded those things that could cause anxiety for you in the future

It is a lot to think about and there are many resources that can help you navigate the process. I would recommend the My Future Care Handbook. I’ve attended a course run by Mycarematters where they guide you through the handbook. What’s great about it helps you to prioritise what’s important to you and that helps guide your journey through the handbook. It’s a one-stop information resource for all your future planning needs. You can work through it online and set up a my care profile that can be shared digitally. Highly recommend it!

2. Make Notes

A notes system to keep track of your daily activities or to share information about you is one way to stay independent. You can use wipe off notice boards, a diary, post-it notes, smartphone note functionality, or calendars etc.

Most people have some form of reminder system in place to help them remember important things. That’s no different for someone with dementia. Use post-it notes or signs to identify cupboards, draw contents, and label clothes drawers. Have a reminder notice by the door to remember to pick up keys, coat etc. There are different ways of making notes that can help someone live more independently. Dementia caregivers can also help by writing up reminders on notice boards.

3. Keep a Diary

As time goes by, recollections of the day’s events or people you meet may begin to fade. By keeping a diary you’ll be able to note down what you did, who you met, how you felt and more. These diary entries can be a great tool to help with your memories or just bring you joy in reminiscing of previous events. You may not be a dairy person, so using your calendar could give a similar but less detailed overview of how and where you spent your time.

4. Stay active, positive and maintain a social life

Staying active, positive and doing things you love help maintain your quality of life. These days there are so many positive examples of people living with dementia and these beacons are slowly changing the landscape & perceived stigmas associated with dementia.

One person with dementia is one person with dementia.

We are all different, at different stages of dementia and can’t be treated as one homogeneous group. Some may find it difficult to deal with your diagnosis, whilst others will take it in their stride. Maintain those friendships as best you can

5. Online Tools

You may find it difficult to go to supermarkets depending on the type and stage of dementia you are in. The noise, getting there, finding your favourite foods might become impossible now. If you can use an iPad or a phone you can do online shopping, banking, pay your bills and many more things to make life easier. If you find these devices too difficult you can turn to family, friends to help. You can use a shopping app or make a list using good old pen and paper or have a family or friends do your ordering for you.

6. Daily Routines

Establishing routines at the beginning helps cement and lay down patterns for day to day living. One of the things we established with mum is that she is much more active, outgoing in the morning. By mid-afternoon, her anxiety increases and sundowning kicks in. As a result, we do more physical stuff, make appointments, and do activities together in the morning. You can schedule your activities to fit YOUR best times of the day and build daily routines around those times. 

This is an extract from a post by DementiaWho.com. You can read the rest of the 11 Tips for staying Independent with Dementia by  clicking here.

Hospital visits: necessity or nice-to-have?

Daughter visiting mother in hospital

Hospital visits are in jeopardy again in certain parts of the country. It is easy to understand why hospitals wish to reduce risk of spreading the virus, but the damage done to confused and scared patients is often irreversible when no-one is on hand to speak on their behalf. A hospital stay for someone living with a condition like dementia is already traumatic enough, and at a time of immense pressure on hospital staff who clearly cannot be expected to find the time to sit with a person and reassure them, odds are a stay in hospital will significantly worsen their condition.

No hospital wishes to send home a patient in a worse state than when they arrived but sadly that is often what happens, even prior to the pandemic. It is the worst place for a person with dementia to be, and the longer they stay the lesser the chance they’ll have the same level of independence on returning home, or even be able to return home. Dementia is rarely the cause of a person going to hospital, but it is often the reason they can’t leave.

Many hospitals have signed up to a code drawn up by Johns Campaign that gives carers the right to stay with their loved one. Covid should not be a reason for withdrawing that right (obviously subject to a negative test) but it appears to be happening. Even where the hospital policy allows for exceptions, the message may not make it down to ward level and primary carers are denied access.

On the other hand, it is not always practical or possible for a carer or family member to be at their loved one’s side 24/7. I fully admit to a sense of relief at the prospect of an uninterrupted night’s sleep when my late husband Geoff was admitted for an operation that required an overnight stay. At the time I had no idea of the potential for disastrous consequences a hospital stay can have for someone with dementia, but I also had other commitments that meant I could not have stayed with him even if it had been offered.

I would always encourage carers to request the right to be with their loved one if their circumstances allow. Hospitals need to recognise the value of a carer’s presence for the wellbeing of the patient.  But there are other things relatives can do to mitigate the effect of a hospital stay, such as sending in with the person photos and familiar items that may give them comfort. Best to avoid irreplaceable items when possible however, given the tendency for things to be misplaced.

There have been some excellent blogs written on this topic, amongst them this one by DementiaWho: https://dementiawho.com/dementia-hospital-emergency-go-bag/

Finding a way to share information about the things that matter to a person can make a big difference. There are a number of resources available to help, including the one I developed in the light of Geoff’s experience, called the Mycarematters profile. I created it online because of the numerous times I heard about paperwork being lost or left behind, plus it makes it easy to update and share. It can be viewed online by anyone with your name, date of birth and Mycarematters code. It can also be printed out and is designed to fit on one side of A4 because staff do not have time to read a long document, and a single sheet of A4 can be displayed by the bed.

Whichever method you use, providing information about a person’s needs and preferences when they are not in a position to communicate those things for themselves can help hospital staff avoid exacerbating what is already a stressful situation.

And of course, this is not just about people with a dementia diagnosis. Any of us can end up in hospital and may temporarily be unable to communicate. Creating a profile of your needs and preferences is one of those tasks we should all complete. We include a paper version of the Mycarematters Profile for those not wishing or able to use the internet in the My Future Care Handbook.