Dementia UK and YoungDementia UK merge into one charity under Dementia UK name
On 1 November 2020, Dementia UK and YoungDementia UK merged and have become one charity.
For a number of years the two charities have collaborated, and after much consideration by the Boards of Trustees have decided to join together.
The merger will create a much stronger, more influential organisation in the area of young onset dementia. The combination of the two charities is especially important at a time when we are seeing the devastating and disproportionate impact of Covid-19 on people affected by dementia. Our beneficiaries and supporters are at the heart of everything we do and by joining forces, we will give them a stronger voice. Together we are committed to making a greater difference to people living with young onset dementia and their families.
Our aims from the merger are to:
• Grow and increase the impact of the Young Dementia Network to influence positive change across the UK
• Develop further the specialist support available for people affected by young onset dementia including digital support
• Support more people affected by young onset dementia in the UK
We will continue to operate under the name Dementia UK, to provide a stronger, unified, more influential voice for people living with and affected by young onset dementia – that is, anyone diagnosed with dementia under the age of 65, and their families.
Dr Hilda Hayo, CEO of Dementia UK and Chief Admiral Nurse, said:
“Dementia UK and YoungDementia UK have worked together successfully for years and this is an excellent development, and natural progression, for both charities. Now, more than ever, families impacted by dementia need empathetic, specialist support, and the coming together of these two charities will greatly expand our knowledge, expertise and capability for supporting families facing young onset dementia.”
Tess Gutteridge, Director of YoungDementia UK, said:
“YoungDementia UK is dedicated to supporting people diagnosed with dementia under the age of 65. We recognise the very different impact young onset dementia has on the person and their family. Joining forces with Dementia UK will help us amplify the voices of those dealing with this difficult condition, and reach even more people with specialist advice and support. Together we are committed to making a greater difference to people living with young onset dementia, and their families.”
The service offering of both charities will continue unchanged for the time being, with the view to enhancing these services in the future. The Young Dementia Network and the Young Dementia Oxfordshire support offering will continue under their existing names.
Spotlight on the Lincolnshire Admiral Nurse service
With a team of six Admiral Nurses and launched in 2019, the Lincolnshire Admiral Nurse service is a partnership between Lincolnshire County Council, St Barnabas Hospice and Dementia UK. We spoke to Admiral Nurses Tom Rose and Sarah Bedward about their work and how they have adapted to cope with the demands of the pandemic.
Tell us a little bit about the area and what the needs for the project are
Tom Rose: Lincolnshire is the fourth largest county in the UK with a high proportion of older people – 5% above the national average of people over 65. We know that the older population are at increased risk of having dementia, and there are additional health issues in the county which increases the prevalence of dementia.
We also know that families really struggle with understanding the changes caused by dementia and how to best support their loved one at challenging times, so we are definitely fulfilling a need that was previously unmet. The service is quite far-reaching in that it offers support from dementia specialist Admiral Nurses across the whole county.
What do you most enjoy about the role?
Sarah Bedward: This role has been incredibly fulfilling for me in the sense that we are working across boundaries. A lot of referrals to the service are made through the Neighbourhood team. In those meetings, we identify really complex cases of dementia through close working with a range of health and social care professionals as well as those people working within the voluntary sector.
As we are firmly embedded within the community and are also based within St Barnabas Hospice, we can support families across the trajectory of the condition, which is a hugely rewarding part of the role.
How have things changed for you since the onset of the pandemic?
Sarah Bedward: Referrals have rocketed with many families reporting increased levels of complexity given their inability to access day care and respite services. Many family carers are now supporting their loved ones not only from a geographical distance but an emotional one too. I am supporting one family carer in the London area who has obviously had to completely reshape the way she supports her relative in Lincolnshire. I provided encouragement to her around communicating on the telephone and some suggestions of meaningful activities her relative could do to mitigate against isolation.
Tom Rose: Transitioning from a more face to face level of support to telephone based has been challenging for carers and the team, but has been so vital to families who now feel real anxiety around accessing face to face services. Emotional support is so valuable for families with dementia at a time when they just don’t feel their needs are being listened to, particularly in a climate of reduced support services which includes much needed respite care. The amount of emotional support that Admiral Nurses are now required to do has massively increased within the service.
What do you see as some of the main challenges that family carers will have to go through as the pandemic progresses?
Sarah Bedward: Whether people are considering moving their relatives into residential care or have relatives in there currently, it’s been a challenge on all sides in this particular setting. For the former, it’s about validating the feelings that family carers and people with dementia may be going through and ascertaining what would cause them the greatest amount of stress. There’s also a lot of reassurance in the latter camp as many relatives have felt cut off from family members at this time. One of the many things we’ve been telling family members to do is maintain close communication with the care home and see for example if you’re able to get a photo taken of your family member in care.
Are there any special projects which the service will be involved with over the months ahead?
Tom Rose: One means of ensuring continued support with carers has been via the use of video conferencing technology to enable face to face communication remotely. This has also presented challenges, in part due to a digital divide geographically and demographically, reluctance for some carers in accessing services in this manner and a transition away from in person contact. This has formed a piece of on-going research with Dementia UK about the longer-term use and implications of video conferencing technology within Admiral Nurse services.
As the service is hosted by St Barnabas Hospice, the Admiral Nurse Service in Lincolnshire has also been involved with Project ECHO (also hosted by St Barnabas). The ECHO model brings together clinical specialist teams (the hub) and care providers (the spokes). Through teaching sessions and case presentations, the spokes have the opportunity to discuss any cases which they have found challenging and determine the best course of action together. Sessions on aspects of dementia care have been facilitated with care homes, primary care and the wider community. Project ECHO has been shown to support and upskill care providers to improve health outcomes.
This project providing dementia specialist support to families in Lincolnshire has been made possible by an award from Postcode Community Trust, a grant-giving charity funded entirely by players of People’s Postcode Lottery.
Care homes and the coronavirus outbreak
The outbreak of this coronavirus has been a challenging time for everyone, but especially for people living in care homes, their families and the care home staff. This is because people living in care homes are likely to be older, living with dementia, frail or have other underlying health conditions; all of these factors place them at increased risk of coronavirus.
Social distancing and visiting restrictions have deprived residents of vital stimulation and support from family visits, which can lead to a marked deterioration in their wellbeing. This has put significant emotional strain on family carers as they grapple with questions around when they will be able to visit next, and what condition their relative will be in when they are allowed to visit.
To offer support, Dr Sarah Russell and Suzanne Wightman from our Professional and Practice Development Team have put together some common questions and answers. We hope this information will help you, along with the care home, to support the person you love and care for.
What is the government guidance about visiting in a care home?
Care homes are understandably cautious about visits because of the risk of infection, the variability in access to testing for residents and staff for coronavirus, as well as access to personal protective equipment (PPE). The guidance about care home visiting for England, Scotland , Wales, and Northern Ireland are all informed by the local Director of Public Health and health protection team, who assess the risk of the number of coronavirus infections in the local community or individual care home. Guidance includes information about visiting policies, making decisions for particular residents or groups of residents, infection-control precautions as well as communicating with family and others about their policy and visiting decisions.
The aim is to prevent future outbreaks as well as ensure the health and safety of care home residents and staff, in addition to families who visit. This means that the guidance could change if there is an outbreak in the home or local community, and visiting could be further restricted again. Talk to your care home to find out about the position and latest updates in relation to local visiting requirements and restrictions.
Can I visit?
Discuss with the care home manager how the home can meet the care home visiting guidance, such as through an individualised visiting care plan. This could include visiting to support the mental or physical health and wellbeing of your loved one, end of life care, and, in some circumstances, to provide essential mental or physical care (see the Methodist Home Association More Than Just a Visitor: A Guide to Essential Family Carers).
Ask the care home manager about their visiting protocol. Some examples of questions you can ask include: how long and how often you can visit; if they have a designated visiting area (inside or outside); if you can visit in the room and what infection control precautions you might have to take.
Some family carers may still be denied contact due to the restrictions in place. This may be very frustrating and distressing but having regular and open conversations with the staff team should help. If you are feeling distressed and need support, then the Admiral Nurse Dementia Helpline can help you work through these feelings and plan a course of action.
What might happen before my visit?
As well as the practical arrangements, such as traveling to the care home, the home may discuss specific details for your visit. This includes an allocated time to visit, how many visitors are allowed, staying outside until you are called in, having your temperature taken or showing a coronavirus test result, using hand sanitiser, staff wearing PPE, being asked to wear PPE yourself and going direct to the designated visiting place, hub or pod (see an example of what one of our Admiral Nurses has done on this).
During your visit you may have to wear PPE, or be in a space with a glass or plastic dividing screen or table between you. The home may also confirm what gifts you can bring in, and if they can be given immediately or have to be quarantined first to be cleaned.
I’m feeling a bit anxious about my visit. What if my relative doesn’t recognise me, or if they get upset during the visit?
Visiting in the current circumstances is very different to before. Discuss with the home how they can prepare and support your loved one before and after your visit. It may be difficult for your relative to recognise you if you are wearing PPE, and social distancing may stop you from being able to touch them to show your affection. Whether you are wearing a PPE or are behind a protective screen, some tips for communicating include speaking loudly, clearly and in short sentences. Use your body language to communicate affection, such as ‘miming a hug’ or ‘blowing kisses’.
It is possible that your loved one may become upset during your visit. Listen to why they are upset. If it feels right, apologise for why you have not been able to visit by reminding them that a virus is going round, and reassure them of your love, care and affection. Bring in gifts and mementos to help keep in touch, and include the family; for example, grandchildren’s drawings, photographs of friends and relatives, and cards with short written notes. You could take a photo during the visit, and ask the care home staff to display this clearly in the person’s room.
Regardless of how your visit went, make sure that you have someone to speak to afterwards, such as a friend, Admiral Nurse or member of the care home staff.
How do I stay in contact with my loved one?
Staying in contact might not feel the same as before the coronavirus outbreak.
For some people, particularly families who are caring from a distance, using video calls such as Skype, Zoom or FaceTime will be successful and enjoyable. Check out if the home has Wi-Fi and how much help your loved one needs to use such technology. Perhaps suggest a regular time of the day and add in other family members to the call, if this won’t overwhelm your relative. There are also other things you can do if conversation proves challenging, such as a virtual cuppa together, reading a favourite story or newspaper, or perhaps just sharing family news.
Not everyone likes video calls, so other methods might be more helpful. You could arrange a regular phone call, using simple and short sentences. Send letters, postcards, or emails regularly to your loved one, with news, photos or messages, and discuss with the staff about helping your loved one to read them. Include small reminders of who is in photos and where it was taken, so the care home staff can discuss and share it with them.
You could send small gifts; perhaps something tactile, comforting or familiar. Something that has a lovely scent or feels soft, such as a new pair of pyjamas or scarf spritzed with a favourite perfume, can be evocative to the senses and provide stimulation. You could send an audio story book, music CD, or recording of you reading a story. Ask staff to build a photo or life story (see link to our resources on this) board in your relative’s room and send relevant items to add to it.
Staying in contact works both ways. Discuss with the home how your loved one can contact you, or share news of their day. Ask the care home staff if they can take and send you photos of what your loved one has been doing, or when they receive your letters or gifts, or maybe help write you a letter, postcard or email.
How can I continue to contribute to the care of my loved one?
Discuss with the care home how you can contribute and be informed of any changes to your loved one’s care, particularly if there is deterioration in your relative. This might include asking when the next care plan review is due, so you can be involved. Check that the home still has the correct emergency numbers for you, particularly if you hold Lasting Power of Attorney (Health and Welfare), and if there is any advance care planning in place, (please see our resources on this) so if there is a change in your loved one’s condition, you will be consulted.
I am not happy with the care that my loved one is receiving: what do I do?
There may be times when you are not happy with the care your loved one is receiving or how the care home is communicating with you. The coronavirus outbreak has challenged us all in extraordinary ways. It may be helpful to make a list of your concerns and consider if they are related to the coronavirus social distancing requirements or something else. Arrange to speak to the home manager, saying what you want to discuss with them and why. Ask for a plan of action from your meeting, so that you can work together to support your loved one.
My relative is dying in a care home. I need to be there for them but I’m not sure how I can be
Care home visiting guidance from England, Scotland, Wales and Northern Ireland all identify the importance of a relative/family carer being supported to see their loved one if they are dying.
Discuss with the home their end of life visiting procedures, as well as how and when they will update you about your loved one’s condition. Speak to the home about what you think is important at this time. Perhaps there is a particular type of music your loved one would enjoy listening to, or a favourite night dress or blanket. Maybe the smell of your perfume or aftershave on the bed spread or your picture by the bed will be a comforting reminder of you when you are unable to be there.
You may feel feelings of loss, grief and bereavement during this time. This is normal, but you might find it helpful to discuss and share with a friend or family member how you are feeling. Our Admiral Nurse Dementia Helpline is also there for you to discuss any feelings of grief you are experiencing.
For anyone who has any questions or concerns around the issues raised here, or around dementia generally, please get in touch with Dementia UK’s Admiral Nurse Dementia Helpline on 0800 888 6678 or email@example.com.