Looking after yourself – a guest blog by Age UK
8 September 2017
When you’re caring for someone else, it’s easy to overlook your own needs. But looking after your health and making time for yourself can help you feel better and cope better with your caring role.
Caring for someone with dementia may lead to feelings of guilt, sadness, confusion or anger. Unlike with other conditions, it can be difficult to communicate and share these feelings with someone with dementia, leaving you feeling very isolated. It’s important to acknowledge these feelings, and remember that there’s no right or wrong way to feel.
Carers’ groups can be a good way to get support from other carers who understand what you’re going through and can share their own experiences. Most groups meet regularly and may offer speakers, leisure activities, trips and simply time to sit and chat. Ask your dementia adviser or social services about local groups or contact the Alzheimer’s Society, Dementia UK or Carers UK for details.
Online groups can also be a great source of support, especially if you can’t get out and about or if you need someone to talk to when no-one else is around. Try the Talking Point forums on the Alzheimer’s Society website or the message boards on the Carers UK website.
Memory cafes also offer information and support in an informal setting where people with dementia and their carers can attend together. There are often professional carers available to talk to in confidence. To find out about local memory cafes, ask your dementia adviser, local Age UK or local Alzheimer’s Society group.
Some carers feel mixed emotions about day centres, but a variation in routine can benefit you both and allow you to have some time to yourself. There are some specialist dementia day care centres, while others may cater for people with mild dementia.
Day care can be difficult at first for the person with dementia to get used to. Talk to the staff if they seem upset or unhappy about going. And remember that different day centres offer different activities and environments.
Contact your local Age UK
Every area of the country does things differently, so services will differ. Some areas run courses on caring for someone with dementia that can give you information about dementia, tell you about your rights, and help you boost your confidence and recognise your limits. For more information visit www.ageuk.org.uk
Creating a playlist for someone living with dementia – a guest blog by Playlist for Life
6 September 2017
Dementia doesn’t affect just one person; it changes the lives of families and friends too.
A personal playlist can help your loved one manage the symptoms of dementia and restore a sense of self when the disease feels too much. Listening together can be a chance for real connection and happiness.
How to create a playlist for someone living with dementia…
Here are five simple steps to get you started:
1. Create a long list of potential songs.
You are looking for music that is meaningful to the person you are making a playlist for. You can ask the person or their family members about favourite tunes or you can start looking for clues. How old is the person? Where did they come from? Where did they live? What was their job? Did they have children? Is there music associated with any of the things you know about the person? Our Get Started leaflet may give you other ideas of questions to ask. Add any ideas to your long list of songs.
2. Look more widely for clues.
Are there old photos showing the person at a musical event or triggering any ideas about music e.g. on the football terraces or at a Sunday School picnic? Does the person have a record or CD collection at home or hidden in the attic? Are there any programmes or ticket stubs in a special drawer?
3. Track down fragments of songs.
There are lots of great apps and websites to help you identify songs that you can’t remember the name of e.g. Midomi.com, Musipedia and FindMusicByLyrics. You can also type any lyrics you remember directly into Google, or other search engines, using quotation marks around your search term e.g. “Ziggy played guitar”
4. Test your long list with the person.
Make sure the room is calm and comfortable. You will need to have access to the internet to play the music on your phone or laptop to the person you are making the playlist for. You may wish to use our journal to help you record what happens. As each song plays, take time to really focus on them and look for any reaction or response. This might be eyes opening or moving around, fingers or toes tapping, a change in facial expression. They might become more alert or speak. They might become more relaxed or more responsive. Put any song the person responds to onto the playlist.
5. Using music safely – watch out for red flag songs.
Music is powerful. It can transport people to another time or place. That is a great gift, but you do not want to take someone back to a bad place. Tears are not always negative, but if someone becomes very agitated or distressed in response to a certain song, you should stop the session and discard that music. Remember to keep a note of red flag songs so that they are not played again.
For more information about Playlist for Life visit https://www.playlistforlife.org.uk/
“I was once where you are now” – by campaigner and writer Beth Britton
29 August 2017
As a former carer to my dad, National Dementia Carers Day is close to my heart. My dad lived with vascular dementia for 19 years, going ten years without a diagnosis and then spending the last nine years of his life in care homes. When I meet carers now, through my work as a Freelance Campaigner, Consultant, Writer and Blogger, I often find myself saying: “I was once where you are now, and have some idea of what you are going through.”
“Some idea” because no two experiences are the same. For a start, I hope very few people would go ten years without a diagnosis now. NHS initiatives around timely diagnosis, and more controversial ‘case finding’ policies should mean that the development of dementia is picked up sooner. Spending nine years in care homes is also not what most people would want, and is avoidable with good post-diagnostic support that takes a whole family approach, albeit the holistic model I have in mind is far from the norm for everyone.
But whatever the differences in all of our caring experiences, there is something that unites and binds people who care, or have cared, for loved ones living with dementia. Perhaps because dementia physically affects the brain of the person living with it so profoundly, and the complexities of the brain make it an organ of mystery in so many ways, the resulting emotional effects on those caring for a person with dementia aren’t fully understood, with many carers struggling to acknowledge or cope with their feelings.
Having taken part in many carer-focused events in the five years since my dad died, meeting people with hugely diverse caring experiences, I’ve sometimes been asked why caring for a loved one with dementia requires any more recognition than any other caring experience. In essence, the answer is it doesn’t. Whether you are a parent-carer, a young carer, a sandwich carer or an 80+ carer, and whether the person you care for is living with cancer, a learning disability, MS, heart disease or a mental health condition, you will experience a myriad of challenges.
The uniqueness with dementia is the breadth of people living with one of the numerous types of dementia, the duration the person could live with their dementia, the degenerative and terminal nature of dementia, and the historic lack of understanding, support and funding for families affected by dementia. Living well with dementia doesn’t happen within traditional health and social care support models, and as a result so many people with dementia and their families fall through the gaps, left to fend for themselves, often just waiting for a crisis.
My wish as we celebrate everyone caring for a loved one with dementia is that those gaps become smaller and the crises fewer. That people with dementia and their families have the awareness we never had when my dad was developing dementia, and access to the knowledge that makes your choices more informed. That you have a named professional to support you, and the education you need (either offered or researched yourself) to understand what living well with dementia means in practice. And most of all that you don’t feel alone – I was once where you are now, and even faced with many difficulties I shared some beautiful moments with my dad. Now my dad has gone, those memories are the ones I hold in my heart and cherish.
Film 1 – What I believe carers need and how they should be recognised as experts
G8 Dementia Summit film – My experiences with my father
Going on holiday with someone with dementia – By Lucy Harding, COO of Dementia Adventure
21 August 2017
In my seven years working in the travel industry I saw how beneficial it can be for people to take a break, experience new places and people, revisit beloved locations and continue to feel a sense of adventure in their lives.
When I met Neil, he had been supporting people with dementia and their carers for most of his career. We saw a lack of choice and control, and a failure in the current system to offer anything which we would see as desirable if this illness were to affect us.
Motivated by this, we decided to combine our respective expertise to offer a range of holidays and short breaks for people living with dementia and their carers to experience together. To date, we have delivered 57 holidays and helped over 200 people take a much needed break.
In that time we have learnt a lot about travelling with people with dementia. Dementia affects people so differently and of course everyone with dementia is an individual. However, here are some basic guidelines that should be useful in everyone’s situation.
Top tips for travelling with someone with dementia
An extra pair of hands
First and foremost there is simply a need for extra pairs of hands sometimes. If you are planning a trip try asking friends and relatives if they would be willing to go with you. If they are in short supply or unable to help due to other commitments, try asking a volunteer or a befriending service. If money is not a barrier you can ask a home care provider to supply a helper/carer for a week. People who are helping should ideally be someone who knows the person well. If they don’t they will need to be thoroughly briefed on their needs and preferences. They are there to help and must be constantly vigilant and reassuring
Ask for assistance
All the train companies and airports offer assistance for disabled passengers. You qualify for this service. Just because your “disability” is not visible doesn’t mean it isn’t valid. So use this service whenever you can. Being taken to the front of a queue and given a helpful hand along the way can make a huge difference to how stressful a travel experience is. Local visitor attractions will also have assistance services – always ask.
Allow plenty of time to do everything
From travelling to the venue, to walking around a stately home’s garden. Literally taking the time to smell the roses will bring great rewards.
Don’t be too ambitious
Don’t try and pack everything in, or to do too much in one day.
Take frequent breaks
Making sure blood sugar levels are well topped up and that dehydration isn’t an issue will give you much more energy to enjoy yourselves. Savoury snacks or sweet treats like an ice-cream can provide useful incentives to go to places as well as welcome pick me ups in the course of a day.
Be well organised
If at all possible everything should be well organised, booked and preferably paid for before you go. Don’t leave anything important to chance and have a framework upon which to hang your holiday – then the fun can happen!
Be positive and upbeat
Do try to maintain a cheerful disposition. Even if something goes wrong try to adapt and move on. Don’t let it get you down, do something else instead. Having a stack of things such as jigsaws, photobooks and puzzles with you can be a helpful distraction in a difficult situation. People with dementia can be very sensitive to people’s moods and feelings so do be careful not to project any negativity.
Make sure people are not too hot or too cold and have regular opportunities/prompts to go to the toilet – this reduces the risk of accidents. If your person is likely to take off in the wrong direction then buying a tracker like the one sold by Unforgettable is a good idea.
Seek professional assistance
Talk to us here at Dementia Adventure, or other organisations who specialise in supporting people with dementia. Seek professional help if you feel you need the extra support. As well as us, you might consider The Mede, Amy’s care, Mind for You, Revitalise or Cherish holidays.
For more information about Dementia Adventure, call 01245 237 548 or visit www.dementiaadventure.co.uk.