Supporting people living with young-onset dementia
Thankfully, diagnoses of dementia for people under the age of 65 is relatively rare, it is thought approximately 9% of all persons living with dementia are under the age of 65.
Whilst there may be similarities between persons living with dementia, the impact upon an individual’s life is likely to be quite different for a younger person; they may still be working, have children to care for, dependent parents, significant financial commitments such as a mortgage.
The social care and financial support available is often different or accessed differently which can also feel like a minefield.
Colten Care and Dementia UK understand that age-appropriate support and guidance can be hard to come by. I myself have been privileged to support a number of families in this position, as well as aid in transitions of care and respite, spending time supporting in their home and local community and also upon transition to dedicated dementia community.
Planning and preparation are key and knowing that there can be a single point of contact for support and direction, through the Admiral Nurses, has proven to be a comfort during times of stress.
Supporting our homes.
This past month I have been supporting homes, hands-on as a nurse on the floor.
People often underestimate the vast clinical skills and knowledge needed by a care home nurse.
As experienced practitioners we are used to working in a nurse-led environment, it is important to continue to develop our practice and increase our expertise.
By expanding upon my practice boundaries, I am able to offer even greater continuity for our residents and their families, trial different interventions and access further relevant education and development.
Overall, this has shown to be a positive evolution for improving the physical and psychological wellbeing of not only our residents, but families and staff alike.
The opportunity to offer intensive support within a home enables me to enhance and strengthen excellent practice in dementia care: physical health, management of chronic and acute conditions, provision of prescribed medication, meaningful and purposeful activity, nutrition, etc.
This holistic, nurse-led approach emphasises dignity in care. You can live well with dementia.
New diagnosis support and care.
It is important to recognise that many people with dementia live full and meaningful lives after diagnosis and that getting a diagnosis is often the first step in moving forward. This doesn’t mean that people should struggle alone. Clinical, practical, and emotional support should still be readily available to aid others, if needed, in resilience and adapting to changes.
Forward with dementia is a new, evidence-based online resource developed internationally with Admiral Nurses, people living with dementia, their carers and healthcare professionals across five countries: the UK, Australia, Canada, Netherlands, and Poland.
The website was created to challenge negative stereotypes about dementia and aims to motivate people to live as well as possible.
It has been designed to help people navigate life in the first year after a dementia diagnosis.
It offers information and practical solutions to help people understand dementia and seek support, and anyone who visits the site can build up their own personal toolkit of resources.
Take a look: CLICK HERE
This week is Dementia UK’s “Time for a Cuppa” fundraising event (1st – 8th May).
Colten Care have always had a desire and passion for fundraising and supporting charitable work and initiatives.
During the pandemic we have had to become more creative in our fundraising efforts because, as always, this money is desperately needed.
Currently, I am the only Admiral Nurse in Dorset and the only care home Admiral Nurse in the South Coast, and since the pandemic I have seen a huge increase in the amount of people seeking support in the community. At this time support groups, day centres and many routine NHS support have been suspended. The isolation and intensity of caring for someone affected by dementia has only increased and Admiral Nurses are needed to continue to support families through some of the most challenging days they have seen.
So, this May, have cake and a cuppa with friends and family to fundraise for Dementia UK, and help even more families receive the life-changing emotional and practical support of dementia specialist care.
Prevention and risk factors of dementia
I often get asked “is there anything I can do to stop me from developing dementia?”
Unfortunately, there are some risk factors you can’t change, these include: age, ethnicity, gender, and genetics.
Whilst getting older is undeniably the biggest risk factor for dementia, research suggests up to one in three cases of dementia is preventable.
Modifiable risk factors include:
• high alcohol intake
• high blood pressure
• lack of exercise
• low educational attainment
• poor physical health
Here are some tips that could help you in reducing your risk factors:
Drinking less alcohol. At most, you should aim to drink no more than 14 units each week. If you regularly drink much more than this, you’re at risk of alcohol-related brain damage.
Asking your GP about support to stop smoking, if applicable, so you’re more likely to be successful.
Keeping physically fit throughout your life; for example regular exercise like walking and swimming and group activities like tennis and fitness classes. The NHS website tells you how much physical activity you need to do to stay healthy.
Making sure you keep socially active; talk to people in group situations as well as one to one.
Taking part in hobbies like art, woodwork, learning a new language, knitting, puzzles and listening to music. These will stimulate different areas of the brain and help with attention and concentration.
It is a topic rarely discussed, not because of its unimportance but often due to social stigma that shrouds the topic in secrecy. Sexuality forms our identity as a person and our desire for intimacy is a fundamental need in all humans.
This is why many areas of our homes have sofas as these can aid intimacy for others; having a cuddle, holding hands, feelings of being close and at ease with one another. This intimacy can heighten an individual’s feelings of safety, security, understanding, and identity.
In some cases, as dementia progresses it can cause a person to lose their inhibitions and understanding of what is ‘socially acceptable’. This is often due to a condition known as ‘insight impairment’ when the dementia causes damage to the frontal lobe of the brain. These behaviours may include swearing at an inappropriate time or being rude to other people.
Individuals with dementia do not display these behaviours to shock other people and they often don’t realise they are doing it. There are many reasons why people with dementia behave in this manner and it is important that this type of behaviour is dealt with in an understanding and sensitive manner.
“Too often we underestimate the power of touch, a smile a kind word, a listening ear, and honest compliment, or the smallest act of caring, all of which have the potential to turn a life around”.
“Tip-Share” was launched on Monday 7 December 2020.
This new website offers people with dementia an easy way to source and share tips that will help them in their everyday lives – especially (but not only) in the time of the pandemic.
All the tips are contributed by people with dementia. The project demonstrates their resilience, wisdom and adaptability in coming up with their own strategies to ‘outmanoeuvre dementia’.
The Tip-Share project was made possible through uplift funding from the National Lottery Community Fund for projects during the pandemic.
There are over 600 Tips, covering 9 themes:
1. The Corona Virus situation
2. Life at home
3. Life outside home
4. Emotional and family life
5. Friendships and peer support
6. Connecting and communicating
7. Money and legal matters
8. Health issues and symptoms
9. Work paid and unpaid
With the help of advisors, George Rook and Dr Wendy Mitchell (both living with dementia), they have worked very hard to ensure that the new website is as accessible as it can possibly be for people with dementia.
They can look though the tips, send in their own, and even request new tips on issues they are grappling with.
Take a look!
Role modelling as an Admiral Nurse within the care home sector...
Being a smaller organisation, than say the NHS, there are many opportunities to influence the care we deliver and as part how our teams develop within the care home. Role modelling is a very important part of this, and most colleagues will tell you that I am very ‘hands-on’ with my work.
Role modelling means that I can assist nurses, care staff, and other roles in their professional development and as a result this can increase confidence and competence in the workplace. I very much believe that theoretical knowledge cannot be a substitute from the opportunity to learn from others in ‘real-life’ care and support circumstances.
There are a number of important characteristics of positive role models. These include:
The demonstration of evidence-based practice (Jack, Hampshire & Chambers, 2017)
An enthusiasm for learning and moral courage in the clinical environment (Felstead & Springett, 2016)
A range of interpersonal skills, including approachability and enthusiasm (Perry, 2009; Stuart, 2014)
Effective teaching skills (Cruess, Cruess & Steinert, 2008)
Continuing to support others from within the clinical environment can be tricky at times but ultimately is key. These experiences can shape the team in their approach and enhance resident care.
No one’s learning is ever complete, we learn from each other.
"Each month Dementia UK support my professional practice and development along with Admiral Nurse peers from along the South Coast. This gives us a valuable opportunity to share best practice and learn from each other. Peer review and sharing of best practice is essential in developing nursing practice, giving the opportunity to critically review our work. We also generally have a guest speaker, sharing new ideas, latest practice and guidance on how we can continue to best support those who are living with dementia and their carers. This is essential to keep us all up to date with current thinking, research underway and what is happening not just in the UK but around the world. Dementia UK has representatives on many boards supporting and influencing change in dementia care. Recently Dementia UK has been asked to be part of a panel for the Nursing Midwifery Council (NMC) looking at the potential of creating a specialist nurse section for the NMC register. Part of this could potentially see additional qualifications and courses for our area of specialist care which would recognise Admiral Nurses, among others, as having specialist knowledge and experience and include additional professional registration. I’ll eagerly await more news!
As always I am here to assist and support our residents, families and in house teams to ensure that we deliver on our dementia promise of 'Supporting you to overcome the challenges associated with dementia' and helping our residents on many levels to live long, happy and fulfilled lives in our specialist dementia communities.
"There are many services that have needed to adapt the way they work to support our residents. Many primary mental health services have been unable to provide the timely routine appointments due to government guided restrictions and increased waiting lists.
Whilst the support from primary services remain, Admiral Nurses play a vital role in support for both residents and community practitioners, by working together they are able to achieve individualised and effective plans of care. By completing formative assessments of mood, memory and well being, enables us to further promote the health and well-being of our residents and their carers more now than ever before.
I consider myself very fortunate to be able to provide this support in a relaxed and accessible style, during such a trying time."
Activities for all
"Whilst restrictions remain in place for the safety of all our residents and staff, there continues to be lots to do. Colten Care's Companionship Team truly think outside the box to create and facilitate so many different wonderful activities. I have been helping the teams in creating additional ‘go to’ boxes with a variety of different activities and items to suit a multitude of different interests and abilities.
Tactile and sensory stimulation are very meaningful forms of occupation and engagement.
Music, for example, can be used to enhance communication and well being, as it can stimulate different parts of the brain to help the person express feelings and connect with past memories.
Different scents and fragrances can also prove powerful and evocative of memory and can aid in relaxation and even sleep.
Touch is of vital importance, not just in the typical form of human touch; hand holding and embraces but the tactile stimulation of different textures and temperatures; soft scarves or ribbon, running a hand through bird seed or sand, even a soft toy can bring an individual comfort, when they may have felt overwhelmed by current environment or their perception of the world."
Caring from a distance
"Caring from a distance is when you support and help someone from afar. There are ways in which you will be still be able to offer companionship, support, and reassurance, for example, speaking to your loved one on the phone, email, letters or maybe video calls.
As well as cordless telephones, all of Colten Care’s communities have tablets and computers within the homes in order to facilitate video calls. A member of the companionship team will be able to support both you and your loved one in facilitating a video call, simply telephone the home to request a time to video call and speak to someone if you need any help and support in setting this up."
Find out the routine and hours of the home, such as meal-times, activities, when your loved one likes to go to bed, so that you can contact them at the most suitable time and enhance the experience.
Ask if you can know what they have taken part in (e.g. music, quizzes, craft), so you can use this to further conversation.
- Find out how best to contact them: by direct phone? By calling a member of staff? If you are writing them letters – is there someone who can help read them to them if necessary?
- Talk to the staff about how you can feedback to them about care or discuss care plans.
Is there particular days when your loved one is reviewed by a doctor or care team?
- Try to notice the positive things, and enjoy the time you do spend together, whether it is via video call, by phone, or by letter.
Taking care of yourself
"The additional distance between you and the person with dementia makes it all the more important that you have a local network of people you talk to. This could be neighbours, other relatives and friends.
Taking care of yourself is important. Caring from a distance can mean juggling many things; maybe you are working or have a family of your own. Perhaps you are worried or feel guilty about what you can and can’t do. You may feel overwhelmed, poorly equipped or on your own. However, you are not alone. There is a lot of information and advice to help guide and support you.
Be realistic about what you can provide, and don’t be afraid to ask for help from other people."
"Delivering great care to an individual living with dementia in one of our dedicated dementia communities is only one aspect of care a resident will require. We regularly work with colleagues both internal and external to Colten Care. This ensures residents living with dementia have their needs assessed and supported holistically. Nurses who work in a hospital setting have quick and easy access to medical and allied health colleagues, in a care home it can be quite different. The nurses working in our care homes are required to ‘think on their feet’ and rely upon years of experience and knowledge to ensure residents are assessed quickly and referred to external professionals without delay. Only recently I was asked to assess a resident who had become more confused and restless. Firstly, it was important to ensure the resident was not in pain, uncomfortable, bored, too hot, too cold etc. I needed to see how staff were interacting with her to make sure they were acting in a ‘dementia friendly’ way, which is ultimately about being respectful and treating someone like an individual. Following a Senior Nurse’s skilled assessment, it appeared that the resident might have contracted an infection which can cause acute confusion. This assessment was presented to the GP and after discussion it was decided to start the resident on an antibiotic. Very quickly the resident started to return to her much happier and contended self."
"Nursing care and support goes beyond office hours. In the past couple of weeks I have been 'on the floor' working night shifts. Colten care are fortunate enough to have dedicated night staff who have built wonderful rapports with the residents, they are recognised as an indicator of night time, time of day being something that some individuals living with dementia can find difficult to comprehend.
Working alongside this wonderful team I found each of them welcoming and appreciative of support and guidance from an Admiral Nurse. I was able to direct and support them in trialling different approaches that would further enhance the night time experience of our residents living with dementia.
During these troubling times Admiral Nurses can be a huge source of support for relatives and friends of those that are living within a care environment. I have had a few phone calls from relatives seeking reassurance and guidance; letting them express their worries and anxieties in relation to the current pandemic.
Some relatives have wanted to remain anonymous whilst seeking support from me; this is fine! Any discussion we may have will always remain confidential, I am happy to help however I can and give anyone who would like support the opportunity to have it, in whichever way they require it."
"Admiral Nurses play a key part in supporting and advocating for both individuals and families affected by dementia. This includes providing assessments of an individuals mental capacity and where needed, facilitating conversations around what is in a residents best interests. The term mental capacity seems like a daunting legal term but effectively it’s just about someone’s ability to make a specific decision. This could be about where they reside, taking medication or going in to hospital should they become unwell. It’s really important that residents are supported to make their own decisions, just because someone is living with dementia doesn’t mean they are unable to make their own decisions. They might not be able to make a decision about where they reside but with encouragement are able to decide what they would like to eat of what they want to do. The role of all our staff in our dedicated dementia care homes is to ensure residents can live as independently as possible and stay involved with decisions about their own care. Where things are more complicated or a family would benefit from support the Admiral Nurses are on hand to provide this."
"As an Admiral Nurse I’m often asked questions about what a diagnosis of dementia means, when is the right time to consider a care home and how can relatives make the most of visiting their loved one. This week I had the opportunity to meet with a new resident and their family, who are struggling to come to terms with their mother’s new diagnosis of dementia and recent move in to one of our homes. The son who lives in the north of the country had spent some time watching the advice video’s on our new web page to prepare for his visit to see his mum, this reduced his anxiety about visiting as he felt more informed about his mum’s needs. "
"Colten Care's Admiral Nurses provide a unique service to those affected by dementia and their families. The Admiral Nurses provide support to relatives of residents in our homes and also to those living in the community. We run ten ‘Time for you' sessions across our five dedicated dementia communities. In a recent 'Time for you' session I met with a gentleman who was newly diagnosed with dementia and wanted to know how best to keep himself well and maintain his memory. I’ve often been asked the same question from relatives. Whilst dementia is a progressive condition it’s important people remain emotionally and physically well. Regular exercise, a good diet and check ups with the GP are all important as well as keeping socially active, meeting with friends and family, continuing hobbies previously enjoyed and learning new things. These are also things that relatives and carers should do to keep themselves well. "
"There are times when an individual’s social, physical or mental health needs change and the environment in which they are currently residing may not fully be meeting these needs. Transitions in care can be challenging but rewarding; given support.
David* came to one of our dementia communities as an emergency admission from an acute hospital. On admission, David was mentally a very unwell gentleman and there were several incidents due to his distress, anger and ill health. It took a great deal of work, support and liaison with the wider teams in primary and secondary health services, in order to support David to be able to remain at his new home with us, as it was deemed too risky to move him when a bed became available at the Colten home of his hometown.
Together I was able to assess David’s road safety awareness and support him in achieving his daily wish to walk to the local shop and purchase a newspaper; something which gave him great joy.
I also spent a great deal of time with David’s partner offering clinical, emotional and practical support, especially when she became reluctant to visit David anymore.
With time and intensive aid there was a distinct and positive change in David’s presentation, transfer was arranged for David to move closer to his partner and reside within his hometown.
I was able to concentrate on assisting David during his first few days at his new home, not only as a support but to offer David familiarity, as we had built an excellent rapport over the past few months. This also meant that I was able to support David’s partner in building her trust and relationship with David and minimise any potential distress that may have been caused by change of environment.