When you or a loved one is diagnosed with dementia, it can be difficult to know what to do. You may feel scared, anxious or even angry about the outcome, and the sudden number of decisions that need to be made can become overwhelming.
To counter these negative emotions, many people find it helpful to create an action plan for the future. This details everything you need to do, so you can approach it at your own time, preventing responsibilities from closing in without notice.
Today, we’ll explore what you could include in your action plan to make life after a dementia diagnosis as simple and straightforward as possible.
Understanding Dementia
The first thing many dementia patients find helpful after diagnosis is to fully understand what dementia is. There are several types of dementia, including Alzheimer’s, Vascular dementia and Lewy body dementia, all associated with the ongoing decline of brain functioning.
Dementia is a progressive disease, meaning there isn’t a cure. However, many people find the development of symptoms to be slow, especially during the early to moderate stages. This means that individuals can live fulfilling lives for many years after diagnosis.
Dementia signs and symptoms can show up in various ways in different people, and no two experiences are the same. However, the most common symptoms of dementia include:
- Memory loss
- Difficulty concentrating
- Language and communication problems
- Confusion about the time or place
- Changes in mood and personality
- Poor judgement
- Difficulty completing familiar tasks
People living with dementia will often require professional care, especially during the condition’s advanced stages. Learn more about dementia care at home through Trinity Homecare’s services.
Tell Family and Friends About Your Dementia Diagnosis
It can be difficult to tell family and friends about your dementia diagnosis, but sharing the news will help everyone understand what’s happening and what to expect. Loved ones may have been worried about the progression of symptoms already, so informing them can put their minds at ease and help them offer tailored, accurate support.
Your loved ones might respond differently from what you’d like when hearing about your diagnosis for the first time. It’s important to remember that everyone processes news differently. When you were first given your diagnosis, you likely felt several conflicting emotions, too. There’s no ‘right’ or ‘wrong’ way for people to feel about your dementia.
Talking to your loved ones about dementia can help you process emotionally. Listen to and include their voices in your discussions, and consider group counselling for emotional support if you’re finding it difficult to deal with as a family.
Get to Know Your Healthcare Team
After a dementia diagnosis, you’ll have frequent appointments to monitor symptoms and the progression of your condition. It may be beneficial to arrange a follow-up appointment with your GP, as they can provide referrals to specialists and memory clinics based on your current needs.
Your GP can help you create a comprehensive care and treatment plan, which can provide you and your loved ones with some comfort regarding the future. Ask about medication, the rate of progression of your type of dementia and who your first point of contact is should you have any more concerns or questions.
Your healthcare team may also include professional carers. There are several types of dementia care available, including residential rehabilitation, nursing support and home care. The latter is becoming increasingly popular, with visiting and live-in carers providing daily support and symptom monitoring from the comfort of their own homes.
Arrange Legal and Financial Assistance
It’s not always necessary to seek professional assistance straight away after a diagnosis, but it’s helpful to keep it in the back of your mind. The sooner you get your affairs in order, the sooner you and your loved ones can rest easy knowing things are organised, no matter what the future brings.
Assign a Lasting Power of Attorney
A lasting power of attorney (LPA) is a legal document that allows you to nominate one or more trusted individuals to make decisions on your behalf. People with dementia often lose the mental capacity to make decisions for themselves as their condition progresses, so having an attorney in place can be a big relief.
You can assign your LPA to cover:
- Health and welfare, which covers decisions surrounding daily living, care options and medical treatments
- Property and financial affairs, which covers things like banking, bills, investments, benefits and the management of property
You may choose to have one LPA to cover both of these concepts, or different trusted individuals for each. It’s essential to register your LPA as soon as possible to ensure your wishes are respected in the future and that decisions are made with your best interests in mind.
Make a Will
All adults should have a Will written, to ensure that their money and possessions are distributed to the correct people after their death. If you don’t yet have a Will written, you may want to prioritise this so it’s completed sooner rather than later. If you already have a Will, consider whether it needs updating before your symptoms progress.
Inform Your Employer About Your Diagnosis
If you’re employed at the time of your diagnosis, we recommend that you inform your employer as soon as possible. This helps them take the necessary steps to support you in your job and ensure you’re legally protected from discrimination.
Some employers will have included a clause in the company policy that you must inform them of your diagnosis, so make sure you know your own company’s rules surrounding long-term health conditions. This is most common in healthcare, the armed forces and jobs that involve driving or operating heavy machinery.
Inform the DVLA and Your Vehicle Insurance Company
After a dementia diagnosis, you’re legally required to inform the Driver and Vehicle Licensing Agency (DVLA). This doesn’t mean you necessarily have to stop driving right away, but you might be asked to take a driving assessment or be issued with a shorter licence for up to five years.
You must also tell your insurance company about your recent diagnosis. They’ll work with the DVLA to assess your road risk and determine if any adjustments are needed to your policy. While it’s possible you may have to stop driving, this isn’t the case for everyone with early-stage or young-onset dementia.
Check Eligibility for Benefits
People with dementia may be eligible for certain benefits to help with treatment, employment and care costs. Depending on your circumstances, you may be entitled to:
- Disability benefits: You may be eligible for Personal Independence Payment (PIP) or Attendance Allowance (AA), depending on your age and the requirements of your need. This can help offset the additional costs associated with living with a disability.
- NHS-funded nursing care: Patients with dementia living in a nursing home may be eligible for NHS-funded care.
- Council tax exemptions: If you currently receive the middle or higher rate of AA, PIP or Disability Living Allowance, you may also be exempt from paying council tax.
- Carer’s Allowance: Family and friends who step into the role of full-time carer may be entitled to Carer’s Allowance, which indirectly impacts your standard of care.
You may find it helpful to speak with a financial adviser or solicitor about your finances. To continue reading, take a look at our helpful guide on benefit entitlements.
Make Your Home Dementia-Friendly
A common concern among people diagnosed with dementia is that they’ll have to move into an assisted living facility and lose their independence. However, this is certainly not always the case, as with the right modifications, you can transform your living space into a dementia-friendly home. Ensuring your home helps your condition rather than hinders it is a great way to boost your self-esteem, independence and mental well-being.
There are several adjustments to make around the home, including:
- Install home aids: Shower seats, grab bars, bed hoists, and video doorbells are just a few examples of home aids that can make living with dementia easier.
- Clear pathways: Remove low-lying furniture and rugs from the walkways, as these can become trip hazards.
- Keep important belongings in plain sight: Items such as phone chargers, e-readers, and glasses should be kept out on work surfaces so they can be easily located.
- Label things: Add labels to everything, from the sugar bowl to the bathroom door, so you can find everything you need without stress.
- Use motion-sensor lights: Automatic lights are beneficial at night when you need to move around without increasing your risk of falling.
- Optimise the bathroom: Add a raised toilet seat, walk-in bath or shower room, and contrasting colours to make it easier to use the bathroom without assistance.
You can apply for a needs assessment from your local council to assess your current home and the requirements of your condition. The assessor might recommend certain support aids, such as a professional carer or home adaptations, which can be arranged with financial help from the authorities.
Build a Strong Support System
Connecting with various support services can be beneficial in ensuring you always have someone to turn to in times of need. Along with your friends and family, you can also add professional carers to your support system, along with your healthcare team and local dementia services. These might include:
- Support groups
- Memory cafes
- Planned activities for people with dementia
- Day centres
- Volunteer befrienders
Dementia can be isolating and lonely for people who think they can’t go out as much anymore due to fear of getting lost or confused. Live-in dementia care can provide companionship and emotional support to people who are worried about the progression of their symptoms. Trinity Homecare carers are fully trained, compassionate and experienced in dementia care, prioritising the independence and dignity of our clients.
Plan for the Future
Continuing life after diagnosis can seem daunting, but with the right help and support, you can live well with dementia. While your future plans may look slightly different after diagnosis, you can prioritise your independence and personal preferences while still in early-stage dementia.
To continue living well with dementia, we recommend:
- Focus on meaningful routines: Routines help the brain predict what’s coming next, which can be reassuring and stimulating as your condition progresses.
- Create a care plan: A care plan can be adapted as your needs change, so include your care preferences and wishes to make sure your carers adhere to your requests throughout your future support.
- Eat well and stay hydrated: Proper nutrition and hydration are crucial for maintaining brain health and can help prevent symptoms such as delirium.
- Protect your mental and emotional well-being: Mental health is just as important as physical health, so focus on what makes you happy and continue your hobbies and social activities.
- Prioritise sleep: Good sleep is essential for people with dementia to manage symptoms effectively, so implement a wind-down routine and maintain consistency in sleep and wake times.
Talk to Our Team Today
If your loved one requires home care, chat with one of our friendly care team today. We offer a free, no-obligation enquiry and assessment service and are happy to offer information and advice to help you find the perfect home care solution.
Call us on 020 4572 5583 in confidence for a free, no-obligation quotation. If you are enquiring outside of our opening hours, please complete our online form and we will contact you the next business day.
