What To Do If You’ve Been Diagnosed With Dementia

If you or your loved one has recently been diagnosed with Alzheimer's or dementia, you may be thinking - “now what?” People newly diagnosed with Alzheimer’s disease or another form of dementia often feel overwhelmed and uncertain about the future.

Remember that there is no “right way” or “wrong way” to respond to a dementia diagnosis - everyone processes things differently.

When you’re ready, you can take plenty of actions to help yourself become more comfortable with your diagnosis. Three key steps are learning about dementia, planning for the future, and finding out what kind of support is available.

What happens when someone is diagnosed with Alzheimer’s or dementia?

The question of what to do when a parent is diagnosed with dementia is slightly more complex. While it’s undoubtedly good to encourage your parent or older relative to take positive steps, it’s equally important not to rush them into it. Once diagnosed with dementia, they will need time to absorb the information their doctor has given them and come to terms with the news.
Below, we’ve outlined some positive “next steps” for people recently diagnosed with dementia and dementia caregivers.

1. Learn about dementia

Learning about dementia can help people living with the condition and their loved ones feel more empowered. You can access reliable information from:

• Reputable internet sources
• Books
• Podcasts
• Your healthcare provider

Dementia and Alzheimer’s Disease are progressive conditions, which means the associated symptoms worsen over time. Reading about the different stages of dementia can take away “fear of the unknown” by giving you an idea of what to expect.

The NHS website is an easily accessible and trustworthy source of information for dementia and Alzheimer's patients. They provide up-to-date knowledge bases which cover symptoms, care and support, and living with dementia. They also offer an email subscription service which covers need-to-know topics every six weeks.

2. Take care of yourself

Receiving a dementia diagnosis is a life-changing experience. It’s normal to experience a range of emotions in response to the diagnosis and in the following weeks and months. Be forgiving of yourself during this time.

People who have just been diagnosed with Alzheimer's Disease or dementia should - as much as possible - find time for self-care. Do your best to eat a nourishing, dementia-friendly diet, which will positively impact your mental and physical health. It’s also advisable to get plenty of rest and participate in activities you enjoy - especially if those activities involve friends or loved ones.

As time goes on, maintaining a decent level of self-care is essential. Taking care of your body and keeping your mind active can ease the symptoms of dementia and afford a greater quality of life.

Self-care for caregivers

Self-care is vital for caregivers too. If a family member has recently received a dementia diagnosis, it’s essential to take some time for yourself to spend time with friends, keep up with hobbies, and look after your health.

As a caregiver, it’s tempting to dedicate every waking thought to your loved one and try to do everything for them. Keep in mind that you’ll be happier, healthier, and better able to support them if you look after yourself too.

3. Seek out support

The importance of building a good support system around yourself cannot be overstated. People with dementia often feel alone, misunderstood, or marginalised, but this couldn’t be further from the truth.

There are countless support networks, groups, and organisations designed to connect and assist people living with dementia. Accessing these services will help you to meet people who understand what you’re going through, as they are also going through it themselves. This companionship can provide fun, friendship, and a valuable lifeline on less optimistic days.

The Alzheimer’s Society forum Dementia Talking Point is a great place to connect with other dementia caregivers and other people living with the condition.

In addition, the following UK charities support people with dementia and their caregivers:

• Dementia UK: A national charity committed to improving the quality of life for people living with dementia. Registered healthcare professionals and dementia experts provide advice. Call them on 0333 150 3456.
• Alzheimer’s Research UK: A charitable organisation that conducts dementia research and answers questions about dementia. Call them on 0300 111 5111.
• Age UK: A charitable organisation that provides advice on care planning, residential care, and local activities for people living with dementia or memory loss. Call them on 0800 055 6112.

Financial support for people with dementia

People living with dementia may be entitled to financial benefits in the form of an Attendance allowance (AA), Disability living allowance (DLA), or Personal independence payment (PIP). Housing benefit (you can use this to help with rent or mortgage payments) and Carers allowance may also be applicable.

The charitable organisations listed above can provide further information on eligibility and assistance with the application process.

4. Access medical support

Your GP will be able to offer advice, access to support groups, and symptom management strategies to help you cope with dementia. It’s vital that you attend GP appointments regularly to bring up any concerns you may have regarding the condition, including recent health changes and your day-to-day challenges.

Talk to your doctor about local support programmes. They may also recommend symptom-management medication and related therapies. Dementia treatments will not slow down or cure the condition itself, but they can help to stave off symptoms while improving quality of life.

5. Plan for the future

Thinking about the future can be challenging, especially if you have just been diagnosed with dementia. It’s helpful to try and reframe your thought process concerning future arrangements. Being prepared is always a good thing, and planning will allow you to ensure your wishes are followed.

Many people with dementia find that outlining plans for the future eases the pressure and uncertainty they’re experiencing. This can also be a helpful step for loved ones, who may be concerned about discussing future plans, but anxious to ensure your needs are met.

Here are a few things you might consider when planning for the future:

1. Residential care

Most people with early or mid-stage dementia can continue to live independently, with support from relatives or carers where appropriate. As the condition progresses, you’ll likely require more assistance with day-to-day tasks. Eventually, as with many older adults, full-time care may be necessary. Outlining your preferences for this later-stage care will allow you to feel in control and safe, knowing that everything is taken care of.

2. Making a will

A detailed and up-to-date will can help immensely with your peace of mind. This may be the last thing you want to think about if you were just diagnosed with Alzheimer’s, but taking the time to write up a will can be a freeing experience. Once this is taken care of, you can focus on spending time with loved ones and doing what you enjoy.

3. Consider powers of attorney

A Lasting Power of Attorney (LPA) lets you choose who among your family or friends can make decisions on your behalf - if this is ever necessary. LPAs can cover:

• Financial decisions
• Health and welfare decisions

Without an LPA, medical professionals will ultimately be responsible for your decisions if you can’t make them yourself.

The charitable organisations mentioned above can provide information and support relating to LPAs, wills, and other future planning for people with dementia.

6. Embracing life with dementia

What happens after a dementia diagnosis is really up to you, but you mustn’t be afraid to ask for help - if you need it.

Many people stay independent and live happy and fulfilling lives while managing dementia. The key is to focus on what you can do rather than fixating on what you find challenging.

Our mission at Relish is to bring joy to life with dementia. We offer products and activities specifically tailored to people living with different stages of the condition. Browse our dementia resources and dementia-friendly products here.