We spoke to April Yasamee about the work of the Ageing Without Children group in Hastings (AWOC Hastings), which is part of the national campaigning, information and support organisation, Ageing Without Children (AWOC).
AWOC Hastings provides regular meetings and information sharing amongst people without adult children living nearby. The group aims to prepare its members for older age when their mental and physical abilities might be diminished.
April has completed our My Future Care training and has started sharing the My Future Care Handbook as a guide for supportive conversations about later life and future care planning.
The number of people over 65 without adult children is set to rise from over 1.2 million to 2 million by 2030. So, if you support people in this age group, April’s insights are likely to be relevant to you. Let’s see what she has to say.
What challenges do your group members face when it comes to making plans for later life?
We have to face the complicated processes and decisions involved in making later life plans without close family back up. This is especially difficult for older, single people and those without extended family or trusted support.
We tend to lack awareness of the kinds of support available. When we do find care services and legal support, knowing how to navigate them by ourselves is also a significant challenge.
More than anything, we feel the pressure of taking responsibility for these decisions alone.
How do you hope that the My Future Care Handbooks and support will help you better meet people’s needs?
We hope it will help us understand the decisions and plans that will enable us to maintain our chosen independent life-styles in our homes.
We see it as a valuable tool for considering our future plans for care.
Supportive sharing of the Handbook meets our needs by raising awareness of topics we hadn’t thought of before and giving us the confidence to action them.
Feeling motivated by April’s story? Would you like to upskill your team to support people in making plans for later and future care?
Take advantage of our free training and ongoing support programme. Our online training will equip your team to help the people you work with make an action plan and see it through, using the My Future Care Handbook as a source of information and structure for the conversation. Handbooks are available free in certain areas (thanks to area-specific funding), otherwise bulk prices are available.
Come with us to meet Parveen Khan, who works as a Bilingual Memory Navigator for Carers Support West Sussex. Parveen supports unpaid carers in Crawley who are from the South Asian community and who have a family member with dementia.
Parveen has just completed our My Future Care training. She is currently testing out what she has learned to discover what works best for the people she supports.
Read on to find out what she had to say.
What kind of challenges do the people you work with face when it comes to making plans for later life?
The South Asian community has its own dynamics when it comes to thinking about health, care and any future planning. I have found through my work that some decisions are kept right to the end.
Families rarely talk about death or the grieving process.
Living in extended families it is always expected that the person living with dementia will be looked after – but there is often no conversation about how the carer or the rest of the family will cope or deal with the situation in real-time.
Culture, religion and expectations around these bring their own challenges. Different generations can have different outlooks on life and different priorities.
Death can be a taboo subject and so can dementia.
How do you hope that the My Future Care Handbooks and support will help you better meet people’s needs?
The My Future Care Handbook is an excellent tool and resource for my carers. It brings together many elements of a caring role and issues that need to be thought about now as well as in the future.
The My Future Care Handbook takes a practical attitude and approach. This is very much needed in an emotional situation.
It also helps people to be less afraid of having conversations with family and friends.
The Handbook is very much person-focused – it includes healthy eating, exercise and sections about a person’s life story. I think this is really important and helpful as it celebrates the life of the person and leaves a part of them to be remembered when they are gone.
How have you engaged with people so far?
I have been giving out Handbooks to carers who come to my “yeh dosti” sessions, which means “this friendship” in Hindi.
It depends on opportunity, time and when they are free, but I plan to spend some time on a one-to-one basis with them, to help them make their action plans. Face-to-face is always better.
Thank you Parveen for sharing insights into the community that you support and your plans for using the My Future Care Handbooks to help people meaningfully engage with later life and advance care planning.
Feeling inspired by Parveen’s story? Would you like to upskill your team to support people in making plans for later and future care?
Take advantage of our free training and ongoing support programme. Our online training will equip your team to help the people you work with make an action plan and see it through, using the My Future Care Handbook as a source of information and structure for the conversation. (Handbooks are also available free in certain areas, otherwise bulk prices are available.)
We spoke to Alison Brennan, Founder of The Healing Harbour, to find out how our My Future Care Buddy Service is helping her support the well-being of people with life-limiting conditions and/or palliative diagnoses in Norfolk.
What kind of support does The Healing Harbour provide?
The Healing Harbour is a Compassionate Community Group (and registered charity), established less than a year ago in response to the increasing number of people in our North Norfolk Community who have life-limiting illnesses and their families/carers, who often experience a lack of statutory support.
The Healing Harbour has created a ‘Healing Garden’ a space in which to connect with nature and receive therapies for well-being including Reflexology, Drumming and Horticulture. Our focus is on supporting well-being in living with a palliative diagnosis.
We are passionate about sharing conversations and learning opportunities to ‘demystify’ death and dying, empower people to explore choices in advance care planning and nurture the inherent skills in our community by supporting compassionate response in action within our community.
How is the My Future Care Buddy Service helping you to meet people’s needs?
Our community group is made up of a diverse range of skills and people, many of whom have had no professional experience of working with people who have life-limiting illnesses. The My Future Care Buddy training has been fundamental, it provided a catalyst for individuals to explore in a safe environment their own understanding of what is Advance Care Planning.
The My Future Care Buddy training has been a fantastic support to not only explore the potential challenges to having the conversations around advanced care planning, but in accessing supportive resources, and providing a ‘structure’ through the Handbook to enable conversations.
The starting point in the group was to explore our own wishes and choices in death and dying so that as individuals we felt more familiar with the areas in which choices could be made.
One of the most important elements of the Buddy support is that it is ongoing, that the discussions that are held can be accessed when people are able to and that resources and experiences are shared. It is so inspiring to see all the different organisations and people involved in bringing these conversations into our cycle of ‘normality’.
The Healing Harbour has been sharing the work of My Care Matters at local palliative care events and community events, we have held supported conversations for the community after the viewing of ‘Dead Good‘ (Vamos Theatre’s Production exploration of palliative care, death and dying) and worked in small groups completing Statements of Wishes, Advance Decisions to Refuse Treatment (ADRTs) and Lasting Powers of Attorney (LPAs). We have also held Zoom sessions on LPAs for community groups. Some of us are working with individuals to help others become aware of choices they can make for their future care.
We have over 30 volunteers in our group, 13 of which have chosen now to take forward their Buddy training to work alongside others in our community to help explore choices at end of life and advanced care planning. The impact is ongoing as we are now about to start a ‘road tour’ around North Norfolk, offering the community through local advertising and our community connectors the opportunities. So from small starts, great things can happen, Thank you My Future Care Buddy Training!
Would you recommend the My Future Care Buddy Service to others?
The Buddy training is a supportive, enabling process in which people from any walk of life can participate without feeling de-skilled.
The delivery was empowering, people felt safe and comfortable expressing their lack of experience and not knowing. The initial training provides a starting block for awareness and reflection and the My Future Care Handbook is a framework to structure the process. The most important component is the ongoing support and access to continued learning and resource sharing.
Thank you Alison for sharing your innovative work and your support for the My Future Care Buddy Service!
As part of the RISE Project that provides access to University expertise, researchers gathered feedback from potential users of our Service in locations including a line dancing club, an art class, community coffee mornings, a bowls club, walking groups, and a fitness class.
The interviewees gave the following excellent feedback:
The Handbook is detailed, accessible and attractively presented
It prompts people to consider scenarios they had not previously thought about, and to find out about documents they did not know existed
It has an easy-to-understand tone, and this would help to reduce confusion or misunderstanding about the matters covered and their importance
Interviewees with healthcare or social work backgrounds spoke positively about the My Future Care Buddy Service. A typical reaction was that they wished it had been available to them and their patients/clients.
The team at Brighton University also gave us valuable suggestions for expanding and broadening our reach. We are grateful for their support!
If you like the sound of our FREE Service, contact us to find out if there is a face to face support in your area. Or we can match you with a Buddy who will work with you through telephone or video calls wherever you are in the UK.
Buddies use our My Future Care Handbook as the framework for their sessions. It’s packed with practical information, checklists, planning tools and sources of further guidance. When you work with a Buddy, you will receive a copy of the Handbook to refer back to time and again.
Our My Future Care Buddy Service offers training and ongoing support to organisations wishing to help the people they support make plans for later and end of life.
We have trained staff or volunteers at organisations throughout the UK to be My Future Care Buddies and the My Future Care Handbook as a source of information and structure for their conversations. Thanks to grant funding we’ve been able to supply training and ongoing support free to many of them, including free Handbooks for the people they go on to help.
One of the first organisations to sign up was Sage House a specialist dementia hub in Tangmere, West Sussex. We caught up with Natasha Davies and Judith Sotes recently to find out how they’re using the My Future Care Handbook to provide tailored support to their customers
Q: What kind of support does Sage House provide?
A: We provide the latest support, information, advice and activities to people living with dementia and their families. We bring local services together under one roof to offer our customers individually tailored support throughout their dementia journey.
Our Wayfinding service allows everyone entering Sage House to talk to a professional for essential one-to-one support and advice. Our Wayfinders are familiar and friendly faces who support people living with dementia, their families, friends and carers. They can work with people from pre-diagnosis (when they notice dementia symptoms) and remain a named contact through all the dementia stages.
Q: How is the My Future Care Buddy Service helping you to meet people’s needs?
A: Our Wayfinding team is delivering a two-session Buddy workshop for 12 individuals. We are working with five couples and two single participants and the first session took place in April. We covered an introduction to the My Future Care Handbook, setting your priorities, and writing a bucket list. We also invited solicitors to discuss Lasting Powers of Attorney (LPAs) and other legal matters. Following the first session, we assigned the group the task of working on their priority lists.
To provide motivation and ongoing support, the Wayfinder who hosted the workshop is following up via phone call with each participant six weeks after the initial session. The second session will take place a further six weeks later, in July. At this session, we will review what has been achieved so far and focus on the remaining sections in the Handbook, including ReSPECT forms, funeral planning, and letters of wishes.
By hosting group sessions, we can accommodate more people within the allocated time, while also allowing participants to benefit from peer support as well as Wayfinding assistance. Using the My Future Care Handbook, the support is more task-oriented and focused on productive outcomes.
After the final session, we will collect feedback and share the outcomes achieved. One of the attendees has already told us that she has actively started working on the Handbook with our support. She said she had actually purchased it a year ago but had been unable to start without our assistance.
Q: Would you recommend training as a My Future Care Buddy?
A: The Buddy training provided a useful understanding and introduction to the Handbook and enabled us to develop a framework for our workshops.
The Padlet resource (the My Future Care online resource hub) now also provides ongoing support with talks coming up on specific aspects of the Handbook. It will be useful to be able to access these as and when required.
.Thank you Natasha and Judith for sharing your story!
We are excited to support you as you continue to develop your workshop offer and find creative ways to tailor your My Future Care support to people’s individual circumstances and needs.
Would you like to upskill your team to help others meet their future care and later life goals? Discover how the My Future Care Buddy Service can help you support people to plan for tomorrow and live for today!
My Future Care is a project run by Mycarematters 2020 CIC, a not-for-profit community interest company.
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 theMy Future Care Handbook. I’ve attended a course run byMycarematters 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.