As people live longer with a range of health conditions, lifetime loans are increasingly seen as a safe way to afford their — and their loved ones’ — futures.

Spry Finance is the only lender providing lifetime mortgages in Ireland. CEO John Moriarty says: “We are providing financial choice for customers in the 60-plus age cohort to use the wealth that they have in their homes to assist them in the process of having a comfortable and healthy retirement.  

“We do that in a very considered and transparent way. Recognising that they should talk to all their stakeholders, including their families and their advisers.” 

What is a lifetime loan? 

A lifetime loan is a mortgage loan secured against your home. Borrowers do not sell a share of their homes. They borrow a cash sum using their house as security. This type of loan is designed to last for the rest of their life but may be paid off early.  

Unlike a fixed-term mortgage, there are no monthly fees and there is no negative equity. Instead, interest on a borrower’s loan accrues and is paid off at the end of their lives. Customers can choose to pay the monthly interest but are not obliged to. 

The average age of a Spry customer is 72, and the median amount they borrow for a Lifetime Loan is €75,000. 

We have a robust vulnerable customer
policy and continuously work hard to
ensure that our products, services and
advice are flexible, accessible and inclusive.

Customer-centric process in supporting care  

Consumer research, undertaken on behalf of Spry Finance last autumn, found that 19% of people were interested in taking out a lifetime loan to afford care at home.  

“This ranges from assisted living and personal care to long-term illness, specialised and palliative care,” explains Moriarty.  

“We have a customer-centric process where we put the customer needs and decision-making at the heart of our process. That’s why we take the time to meet face-to-face with our customers — to ensure they understand our product and process; and we encourage them to include their family.”  

He concludes: “We have a robust vulnerable customer policy and continuously work hard to ensure that our products, services and advice are flexible, accessible and inclusive.” 

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Lucianne Bird

Director of Learning, National Learning Network

People with a brain injury can experience a life-altering impact. However, services are available to help people make the most of their potential and improve their quality of life.

People attend RehabCare’s day, resource and respite centres to build confidence and self-belief — as per their personalised plan. We provide residential care across a number of specialist services nationally. We also support almost 200 people with an acquired brain injury (ABI) every year.

We know that every person is unique, and so is every brain injury. Our staff from different disciplines will work with you and your family to achieve your goals for recovery. 

Services with a tailored approach 

For many people, their hidden disability means issues accessing essential services, using public transport and managing behavioural difficulties. We provide holistic support for each person to maximise their independence, helping them to socialise and manage their health. Our work enables people to become advocates for themselves and their peers.

RehabCare supports people to participate in meaningful programmes within their centre and forge stronger connections outside of our facilities. For us, that is the definition of true inclusion — for each person to actively participate in their communities. 

With individualised support, we empower people to live the lives they choose and make informed decisions about their future. Providing such services makes an invaluable contribution to the wellbeing and independence of those who use them. 

We know that every person is unique,
and so is every brain injury.

Inclusive training programmes 

National Learning Network (NLN) offers supportive training courses and community-based rehabilitation services across Ireland. Students are supported to improve their quality of life through inclusive education while establishing new opportunities in their communities.

Learning to live with the impact of acquired brain injury (ABI) presents significant challenges. Survivors often make a good physical recovery, however, they may find themselves with residual secondary deficits, including personality changes, memory deficits and mood impairments.

We offer specialised modules for survivors of ABI — from stress management to psychological support. We assist individuals to re-acclimate themselves, often enabling a return to work and enhancing their independence.”

Building a ‘bounce-back’ ability 

A former member of NLN’s Quest service says: “I was taught the means to manage problems and assisted in building a routine that would aid in my recovery. My sessions with Quest were invaluable, building a bounce-back ability that didn’t just get me back to where I was, but brought me back better. I returned to education and graduated with my Masters. Most importantly, I was taught to be more emotionally intelligent.” 

We empower people to undertake positive learning pathways. It’s the flexibility of our programmes that can make all the difference to a person with ABI. 

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Máire Hayes

Clinical Nurse Specialist, the Irish Motor Neurone Disease Association,
Education Officer/Cofounder of the INNF

Elaine Quinn

Neuroscience partner (multiple sclerosis), Roche Products Ireland Ltd.

Nurse specialists in neurology are chronically under-resourced, but they are driving change for the estimated 800,000 people living with a neurological condition in Ireland. 

With an estimated 40,000 new patients a year being diagnosed with a neurological condition, it’s often a frightening time for patients and their families.

Neurology nurses speak out for their patients 

The clinical nurses supporting neurology patients provide outstanding care. However, there are not enough clinical nurse specialists in neurology; in fact, there are just 42 in Ireland.  

That is why experienced nurses in the field have set up the Irish Neurology Nursing Forum (INNF) — to call for better resourcing, more funding for education in the speciality, healthcare provision and support for patients and their families. 

We still need another 80 specialist nurses, which we hope will be provided over the next few years.

Lack of specialist nurses in neurology 

The recently formed INNF is already making progress. Set up to mobilise change nationally, they played a key role as part of last year’s Patients Deserve Better Campaign, which succeeded in securing 23 additional specialist nursing posts which were announced by Minister of State for Disability Anne Rabbitte in the 2023 budget.  

The two cofounders of the INNF, Máire Hayes and Sinead Jordan, both neurology nurse specialists, worked with the Neurological Alliance of Ireland (NAI), 15 of its member organisations and Roche Ireland, to highlight the shortage of specialist nurses in neurology.  

Jordan recalls: “At the time of the Patients Deserve Better Campaign in 2022, 23,000 people were waiting for a neurology outpatient appointment — and 8,000 of those waiting more than 18 months — meaning huge delays in diagnosis and treatment. Investing in more neurology nurse specialists will reduce waiting times and Emergency Department presentations, free up capacity for consultants and ensure patients across the country have access to the specialist support they need. It will also align with the Sláintecare vision to expand services.” 

Hayes adds: “The awareness campaign has been really positive in shedding light on the lack of neurology nurse specialists. The €1.7m funding commitment is a great first step. However, we still need another 80 specialist nurses, which we hope will be provided over the next few years. In the meantime, we invite all neurology nurses to join the INNF.” 

Jordan highlights: “There are 10,500 people living with multiple sclerosis in Ireland but just 24 trained specialist nurses in that area. Extraordinarily, there are only four for Parkinson’s patients.” 

Training and development for neurology nurses 

Another problem is there is no formal postgraduate course for neurology nurses in Ireland, affecting recruitment. “We have to go to the UK to gain specialist training, whereas we need training on the ground in Ireland to entice graduate nurses into our speciality,” says Hayes.  

To this end, we are collaborating with Professor Orla Hardiman, National Clinical Lead of Neurology, in the design and development of a postgraduate neurology course. Graduate nurses will be able to study for the speciality through continuous education modules leading to the required level 9 qualification.”

Roche Ireland is committed to supporting nurse specialists in neurology. “Their refreshing approach to partnership has been instrumental in getting the INNF established,” says Hayes. “They also support our training and development.” 

Jordan says: “The INNF will give a stronger voice to neurology nurses by enabling them to better advocate for themselves, particularly in addressing challenges with capacity, resourcing, education and policy.” 

Invest in neurology nurses to reduce backlogs 

Elaine Quinn, neuroscience partner at Roche, concludes: “People with neurological conditions have a multitude of complex needs that call for a coordinated, holistic approach. If there is more awareness of the value nurses bring to the wider neurology team and the need to recruit extra nurses, we can change the course of their lives.”

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After years of neglect, neurological disorders and brain health are coming out of the shadows. Neurological conditions are the leading cause of disability-adjusted life years and the second leading cause of death worldwide.

The UN High-Level Political Declaration added neurological and mental disorders as the fifth priority in the global noncommunicable diseases agenda. In 2020, WHO established a Brain Health Unit that played a central role in developing an integrated response to neurology through Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders 2022–2031. The IGAP was adopted by all WHO Member States at the World Health Assembly in 2022.

Towards a united voice for neurology

Those exceptional developments called for a global united voice of the neurological community, capable of exerting political influence and engaging with policymakers at the highest levels. In 2019, the European Federation of Neurological Associations (EFNA) started engaging at a global level to capitalise on the promising trends and started advocating for a comprehensive global response to neurological disorders and brain health.

Soon, it became clear that to effect a real change, there is a need to build a global coalition that would have the patient voice strongly built in. Consequently, in 2021, EFNA created the OneNeurology Initiative which evolved into the OneNeurology Partnership co-founded by EFNA and the European Academy of Neurology.

Soon, it became clear that to effect a real change, there is a need to build a global coalition that would have the patient voice strongly built in.

A vehicle to support the IGAP implementation

The Partnership is a patient-focused and multi-stakeholder alliance bringing together international neurological organisations and regional umbrellas. As such, it is the only global partnership where patients, clinicians and researchers come together to advocate for neurological conditions as one. The partnership is united by a vision of a world where neurological health is valued and protected as our most vital asset — to the benefit of all society.

It is calling for neurological conditions to be prioritised globally within the context of brain health. The Partnership speaks in one voice to raise awareness of the impact of neurological conditions, the challenges to overcome and the opportunities to improve brain health for everyone. The iGAP is central to the OneNeurology work that is strategically placed to assist WHO and Member States in successfully implementing the plan. Leveraging the plan, the Partnership encourages patient advocates worldwide to drive change.

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Neurological diseases now represent the leading cause of disability-adjusted life years and the second leading cause of death for adults worldwide.

The Neurological Alliance of Ireland (NAI) brings together over 30 nonprofit organisations to advocate on behalf of the 800,000 people in Ireland living with a neurological condition. National Brain Awareness Week is a nationwide advocacy initiative organised and coordinated by the NAI in March each year.

Growing awareness for brain health

The theme of Brain Awareness Week 2023 is the need for investment in brain health, recognising that one in three of us will develop a neurological condition in our lifetime and there is a critical need for our health system to respond to this challenge.

Ireland will have to overcome serious obstacles if it is to mount an effective response to the challenge of brain health.

Responding to the challenge of brain disorders

The World Health Organization’s publication of a ten-year framework for Neurological Disorders and Epilepsy in 2022 represents a wake-up call for WHO member countries — such as Ireland — to address the burden of neurological disease.

Ireland will have to overcome serious obstacles if it is to mount an effective response to the challenge of brain health. There is a critical need to invest in services for the diagnosis, treatment and rehabilitation of neurological conditions as well as a public health approach aimed at reducing the risk of developing preventable neurological diseases.

National action towards brain health

The NAI Patients Deserve Better campaign, a partnership with Roche Ireland which successfully campaigned to secure 23 additional neurology nurse specialists in 2023, is now calling for the establishment of a nationwide network of community neurorehabilitation teams for people living with neurological conditions. Only 15% of Irish neurological patients have access to a community neurorehabilitation team.

Investing in community neurorehabilitation teams improves the function and wellbeing of patients. These teams are also cost-effective, saving up to 42,000 bed days each year. For every euro spent on teams, the health service saves 11 euros.

This article is endorsed by Roche

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Power is the key to maintaining independence and good quality of life. A proactive approach with a tailored plan and tools to empower you on the journey is critical.

The ‘KEES’ toolkit was developed to simplify the key areas and information on the journey to empowerment and self-management of Parkinson’s disease (PD).

Knowledge: what is PD?

Parkinson’s disease is a progressive neurological disorder. The second most common neurodegenerative disease after Alzheimer’s disease. Parkinson’s affects an estimated 15,000 people in Ireland. It is the loss of a neurochemical called dopamine. As we age, we lose dopamine; but for those with Parkinson’s, it is lost at a faster rate.

It is primarily a movement disorder. However, there are 40 potential motor and non-motor symptoms associated with it. It affects slightly more men than women, with most people diagnosed after the age of 60 and one in ten under 50.

As stated by Bas Bloem: “Seven million people, seven million variants of Parkinson’s. In everyone, the disease manifests itself differently.”¹

Education: optimise symptom control

There is currently no cure for Parkinson’s, but medication can provide symptom control.

With medication, it’s important to ask: What is the medication? What is it expected to help? How long before you see improvement? What’s the best way to take it? Also, keep a diary.

Three crucial aspects to optimise medication are (1) consistent timing, (2) avoiding constipation and (3) hydration.

Medication alongside relaxation and distraction techniques are key to symptom management. What works for one person may not work for the next, hence a personalised approach and plan.

There is currently no cure for Parkinson’s, but medication can provide symptom control.

Exercise: prescribe exercise for all

Exercise is essential in the management of motor and non-motor symptoms. The physical benefits of exercise include addressing balance, gait, rigidity/stiffness and strength.

Psychological benefits include building confidence and improving serotonin production, sleep, mood and wellbeing.

Varied exercises adapted to your level of suitability will help. Don’t forget to enjoy it, so you’re more likely to continue rather than avoid it. Some exercises found to be beneficial include Tai Chi, dance, yoga and aqua therapy.

Support: recognise and reach out

Ready to recognise the need for support? Reach out and get involved! It can be daunting but is an essential component of the toolkit. This network can come from peer support and the wider circle of health professionals. Parkinson’s Association of Ireland provides a nationwide branch network, in-person and zoom classes and opportunities to participate in ongoing research.

[1] Bastiaan R. Bloem, Michael S. Okun, Christine Klein. Parkinson’s disease.The Lancet. DOI: 10.1016/S0140-6736(21)00218-X

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With a growing number of people diagnosed with dementia each year, it has become crucial to educate today’s younger population and give them the tools they need should someone they care for receive a dementia diagnosis.

One-third of young people have someone in their lives who is living with dementia; this may be a grandparent or a neighbour. However, due to the increased incidence of early-onset dementia, it may also be a parent.

Educating younger people about dementia

In Ireland, 63% of people living with dementia live in the community, rather than in nursing homes or hospitals. Hence, we must ensure that we make communities more informed and inclusive.

‘Creating a Dementia Inclusive Generation’ is a new post-primary school programme, developed by The Alzheimer Society of Ireland (ASI) in partnership with the Dementia Services Information and Development Centre (DSIDC).

It aims to educate young people about dementia and the impact that a diagnosis of dementia has on the person living with dementia, their carer and their family. This transition-year programme is designed to educate the younger population and give them a better understanding of dementia.

In Ireland, 63% of people living with
dementia live in the community, rather
than in nursing homes or hospitals.

Breaking barriers with dementia education

The programme aims to increase the younger population’s awareness about the condition’s impact and how they can support people living with dementia in their communities.

We want to empower and educate the next generation; knowledge is key when it comes to reducing the stigma around dementia and building a more inclusive society for people living with dementia.

The programme will also teach students about brain health, making them aware of modifiable risk factors and empowering them to maintain a healthier lifestyle.

Support for people in the community with dementia

On completion of the programme, students are invited to become peer educators to other students across the school system, sports and community groups — to empower even more young people to be part of ‘Creating a Dementia Inclusive Generation.’ Ultimately, we want to remove the stigma associated with dementia. Only then can we create more welcoming and inclusive communities where people living with dementia can live their lives safely and happily.

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Approximately 400 adults and 50 children a year are diagnosed with a brain tumour in Ireland. 

For every adult diagnosed, there is a family; and for every child, there are parents and siblings who need support. Brain Tumour Ireland can help offer that support.   

Many patients who contact us have never met another person with a brain tumour, which can leave them feeling isolated and alone. With everyone in lockdown for the past two years, that feeling of isolation has been perpetuated for so many people.   

During those years, we moved our patient support groups online and started a new group for family members. Peer groups can offer a safe space for people to talk openly about the challenges they are facing. They also allow newly diagnosed patients to meet others who have experienced a similar diagnosis and treatment.   

This way they can offer comfort and hope to one another. In addition, we hold wellness days, online guided relaxation to music, an annual awareness week, updates on research and our annual remembrance service.  

We continue to develop ways to help and support children going back into education following their treatment.

Paediatric support for children with a brain tumour 

We continue to build ways to support parents of children with a brain tumour and recently ran a ‘survey for parents’ to better inform us and the medical profession of the ‘lived experience’ and the very real challenges parents face long after their child’s treatment has finished.   

The information gathered from parents has helped to shape the support services we deliver.  This 2023, we will be setting up a new online support group for parents as well as a one-to-one counselling option.  

At the end of each year, we bring our families together for our family day event which is held in Barretstown in December. This day is solely dedicated to having fun and is open to all children affected by a brain tumour along with their parents, siblings, grandparents, and carers.  

Helping people cope after a diagnosis 

We continue to develop ways to help and support children going back into education following their treatment and find ways to provide support for siblings as the family tries to navigate their way after a brain tumour diagnosis. 

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Chronic pain is a frequent component of many neurological disorders, affecting 20–40% of patients with many primary neurological diseases.

Unlike acute pain, which is sudden and time-limited, chronic pain persists over many months or years. While acute pain has a protective function, chronic pain is pathological and purposeless.

The brain is the source of pain

From neuroscientific brain imaging research, we now understand that all pain originates not in the body — but in the brain and central nervous system. The brain switches pain on and can turn up or down the pain volume regardless of what is happening peripherally.

This explains why people with amputated limbs can continue to feel pain in a missing limb. With chronic pain, the brain undergoes structural and functional changes that mean the pain dial gets stuck at high volume.

A complex experience

The International Association for the Study of Pain (IASP) defines pain as ‘an unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage.’ This latest definition recognises that pain is an emotional as well as a sensory experience. It also acknowledges the pain many individuals experience where there is no biomedical basis for the onset of pain.

Pain may originally appear because of an illness
or injury where you recover from the
initial issue, but the pain remains.

Recovery gone wrong

Pain may originally appear because of an illness or injury where you recover from the initial issue, but the pain remains. This is described as chronic secondary pain where the pain is, at first, a symptom of an underlying condition but then the pain itself becomes the problem. Secondary pain that becomes chronic — that is, lasting more than three months — can include cancer-related, postsurgical or post-traumatic, musculoskeletal, visceral, neuropathic, orofacial or headache pain.

Pain is the problem

Chronic pain can also appear for no apparent reason. The pain itself is the problem with no biomedical cause. Chronic primary pain like this is a disease in itself where the individual experiences long-lasting functional disability and emotional distress because of pain. Examples of primary chronic pain can include musculoskeletal pain, headaches, pelvic pain, irritable bowel syndrome and chronic widespread pain (which includes fibromyalgia).

The way out of pain

A multidimensional approach to pain management and recovery is needed including interventions that help reduce or manage pain, increase functionality and enhance the quality of life. Chronic Pain Ireland (CPI) offers a range of support including self-management workshops, a telephone support line, patient and public involvement (PPI) research partnerships, meetings, public awareness events and social networking.

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Migraine is a complex neurological condition with symptoms that range far beyond a headache. For me, it manifests as hemiplegic migraine. I don’t always get the intense headaches.

My migraine symptoms mimic a stroke, leading to hours, days or weeks — with numbness, tingling or weakness down one side of my body. I have chronic migraine, which means I have more than 15 headache days per month.

Navigating my migraine symptoms and lifestyle

I recently attended an online talk from The Migraine Association of Ireland with Dr Nick Silver, who noted that migraine treatment should always start with lifestyle. After several failed treatments, I chose to stop waiting for a silver bullet and focused on controlling the controllable, while still working with my neurologist.

I have chronic migraine, which means I have
more than 15 headache days per month.

My analogy for migraine symptoms and coping

I view migraine management as steadying a Jenga tower. I picture each brick of my ‘Jenga tower’ as an element of my lifestyle that keeps me on an even keel. Each time one shifts out of place, the tower gets a little more unstable. With too many missing bricks, the tower crashes down, and a migraine attack begins.

This build-up of triggers or ‘wobbly bricks’ causing an attack is called Migraine Threshold Theory. When I feel my tower wobbling, I focus on tapping each, little brick back into place with good sleep, regular healthy meals, regular exercise, mindfulness, hydration and nature — particularly sea swims.

Understanding and approaching migraine symptoms

I talk openly about my condition — not in a constantly complaining way. This has also helped in my relationships as my friends and family now understand that if I need to cancel plans or leave early, it’s because I need to. Has this approach ‘cured’ my migraine? No. Has it made my life much more manageable? Absolutely.

Some days, I climb a mountain; some days, I climb under a blanket, and that’s okay. If you live with migraine, know that you are not alone. Chip away at the little things you can do, control the controllable and hold onto hope.

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