Our first online Meetup for the My Future Care Community

Our panel (above) and attendees covered a lot of topics in the first My Future Care Community meetup in April 2024. These events are held on Zoom and are open to everyone who has taken our training or attended an awareness session.

We heard about tragic and triumphant personal experiences where future care planning either was or was not in place, insights about the lamentable lack of support for future care planning, the sense of privilege at being able to help people make their plans, information regarding the legal validity of documents, and a whole lot more.

Here are some of our key takeaways from the conversation (the full transcript and audio recording are available to My Future Care Community members on the My Future Care padlet):

The difference the My Future Care Handbook is making

  1. The Handbook is particularly helpful if there are complex family situations and they are struggling to have the conversation.
  2. Social services are so bereft of money that they can’t afford to do what they need to do. So we’ve got to find ways of supporting people to support themselves. That’s where the My Future Care Handbook comes into itself.
  3. The Handbook is the perfect retirement present. These are not conversations to delay until your 70s or 80s. We don’t know when things are going to happen to us.
  4. Just introducing the Handbook is not enough for some people – you need to keep it going, have regular sessions.

Advice for supporting people to make later life and future care plans 

  1. Most people need regular support and encouragement to get their plans in place.
  2. You can’t work in someone’s best interests if you don’t know anything about them.
  3. When you know someone is going to be checking in with you in a couple of weeks’ time, it really motivates people to get into the Handbook.
  4. Use the Handbook to clarify your values and wishes for your Attorney and guide them as to what you’d want.
  5. People often say, oh no, people don’t want to talk about that, people don’t want to do that, but they do. We just need to ask them and not make it sound like it’s all about death and dying. It’s about empowering people, to have it their way.
  6. People want to talk about death, they want to talk about what they should do, and they haven’t got the people to talk to
  7. It doesn’t have to be a morose thing… what a privilege it is to be helping people along their journey to [make plans]

The realities of making later life and future care plans

  1. It is much more than just filling out a couple of forms, it is a whole process.
  2. Get things done early. Don’t leave it to a time when, for example for people with dementia, your capacity to write a Will or set up an LPA might be questioned.
  3. The community thinks, well the hospital are going to do it, then the hospital thinks, well, the community are doing it, so nobody does it.
  4. You ca
  5. n’t just keep putting it off until life is more stable around you, because you will simply put it off forever. So work with what you’ve got at the moment and get it done.
  6. There is still a massive lack of understanding as to what a power of attorney is and when it should be put in place.
  7. If you’re dying of cancer, on the whole you’re recognised, you’re supported, you’re funded, you’re given a package of care, you’ve got access to hospice. But if you happen to be 85, living on your own with general frailty, a couple of carers coming in a day, early stages dementia, family living away, you have no access to care, you have no funding for care. And nobody has these conversations with you, because you’re not labelled as being end of life.
  8. It’s very straightforward if you’ve got an obvious life limiting condition, if you’re in the last days of cancer, then you don’t want to be resuscitated, you don’t want to be going to hospital, you don’t want to be given antibiotics. But it’s where you do those same stages when you’re living with dementia, when you’re living with frailty and old age with four care visits a day.
  9. If you haven’t got anything documented, you risk being kept alive way beyond the point at which you might have wanted them to stop.
  10. Doing an LPA may not be easy, but getting a court of protection order in place (if there isn’t an LPA) is way more difficult: we knew the journey he was on and we should have put lasting power of attorney in place when he had the ability to do it. It’s a significant additional burden now.
  11. The most recent document will take priority, this means that if you write an Advance Decision to Refuse Treatment before a Lasting Power of Attorney then your attorneys could potentially override the Advance Decision to Refuse Treatment.

If you haven’t yet completed our My Future Care training or would like to promote greater awareness of future care planning amongst your colleagues, ask us about our training dates and bespoke sessions. By completing the training you will be invited to future meetup events and unlock all the benefits of our ongoing support!

Supporting families affected by Young Onset Dementia

In this article, we highlight the later life planning support provided by Mandy Blair and the team at Dementia Oxfordshire.

Mandy tells us how the challenges of people who receive a diagnosis of Young Onset Dementia in their 50s and 60s are significantly different to the challenges facing older people with dementia.

Let’s see what she has to say:

What kind of support do you provide, Mandy?

We are a support service for people in Oxfordshire living with Young Onset Dementia and their family members. We are one of the few dementia services offering age-appropriate support for people under 65. We offer face-to-face, telephone and email support for people at every stage of their dementia journey from diagnosis through to bereavement support for
family members. Our team of three currently supports around 300 people – around 130 are living with young onset dementia and the rest are family members.

What kind of challenges do the people you support face when it comes to making plans for later life and beyond?

The challenges facing people who receive a dementia diagnosis in their 50s or 60s are significantly different to the challenges facing older people and their support and planning needs are often far more complex.

People in their 50s may still be working, they may have greater financial commitments, they may be carers themselves for children or older family members, they are probably still driving and can be physically fit and well. All of these factors mean that a diagnosis of dementia can have a hugely disruptive impact on a younger person’s life (and the lives of people around them) and this makes it very hard to adapt to – let alone plan around.

These difficulties are often compounded by the fact that age-appropriate support is not always available.

Taking all this into consideration, one of the first and biggest challenges to making later life and future care plans is helping a person find a sense of acceptance and the balance they need to be able to look ahead.

How do you hope the My Future Care Handbook and support will help you meet people’s needs better?

The My Future Care Handbook creates the opportunity to open up conversations. It is well structured and the information is all in one place. The bite-sized chunks of information make it possible for people to dip in and out as and when they are ready to deal with a topic.

It is a good resource for people living with dementia because it is accessible and well-written in plain English. It is also helpful for people to refer back to in between conversations and refresh their understanding as often as they need to.

We also find it a useful tool for working with family members. We use it as an opportunity to engage with them too and to bring the whole family together to discuss key topics.

We have used the Handbook with small online groups and in individual support sessions. We found that generally speaking, family members are able to engage in a group situation but that people living with dementia tend to benefit from face-to-face support.

We frame the Handbook as an opportunity for people to look ahead, express their wishes and make a plan while they have the capacity to do so – and then “park it” so that they can get on with doing what is important to them right now.

We find the Handbook to be a fabulous resource to get people talking and help overcome people’s natural reluctance to think about the end of life, death and dying.

Feeling motivated by Mandy’s insights? Would you like to upskill yourself or people in your group 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.

Request further information.

It is “never too late and never too early” for future care planning!

In this article, we speak to Peter Loose about the future care planning support he is providing to fellow members of Bognor Regis and Slindon Catholic Parish.

Peter completed our My Future Care training recently so that he could share his learning with his church community, using the My Future Care Handbook as a guide.

If you are a member of a community group of any kind, Peter’s insights are likely to be relevant to you. Let’s see what he has to say.

What kind of support do you provide, Peter?

Like most churches, we have a significant proportion of people in the “third age” and conversations with those people confirmed experiences elsewhere that people tend to think about the issues in the My Future Care Handbook when they start to become pressing – whether for themselves or family members.

To address this, to create “conversation starters” and to provide specific support for some people for whom it is a current issue, we decided to hold a series of coffee mornings where we could introduce the Handbook, share experiences and encourage people to make a start.

In practice, we found a lot of people had already made a start on the issues but didn’t know what else to do. The Handbook turned out to be an excellent roadmap for these people. 

What kind of challenges do the people you support face when it comes to making plans for later life and beyond?

People tend to start too late, although I do advocate that “it is never too late and never too early”.

People whose families live afar struggle to find opportunities for the right discussions, especially for the more sensitive questions. And it can be difficult to know where and when to start.

The “What are your priorities?” section of the My Future Care Handbook [in which people can review and select topics that are relevant to them] is as good a starting point as you can get. I stress that “Handbook” in the title is no accident – it is not a novel to be read from start to finish but a reference book to look at periodically and to consult the relevant sections when the time is right.

How do you hope the My Future Care Handbook and support will help you meet people’s needs better?

We hope that it will encourage people to have conversations sooner, whether with the generation above them while they are supporting them or the generations below when we reach that age.

As churchgoers, we are accustomed to reflecting – and prompted by the Handbook, other people’s stories have been stimulating thoughts and conversations.

I have come to regard the Handbook as the go-to retirement gift – now you have extra time available it would be good to make a start, and what better time to begin compiling your life story!

Feeling motivated by Peter’s story? Would you like to upskill yourself or people in your group 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.

Request further information.

Supportive Sharing Between People Ageing Without Children

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.

Request further information.

Meeting Planning Needs in Crawley’s South Asian Community

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.)

Request further information.

The Healing Harbour: Supporting the well-being of people with life-limiting conditions in Norfolk

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?

Most definitely.

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!

Independent evaluation finds My Future Care Buddy Service “highly effective”

We are proud to say that the My Future Care Handbook and Buddy Service were evaluated recently by the University of Brighton and found to be “highly effective”.

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.

How My Future Care Buddy Training helps Sage House’s Wayfinders support people affected by dementia

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.

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.