Dementia Care: A Guide for Families
A dementia diagnosis can rock the world of everyone involved, impacting the lives of the family as well as the person with the diagnosis. The time following a diagnosis can be overwhelming, and as the disease progresses, there's a lot you need to start considering.
As dementia care specialists, we've created this guide to help you navigate through the complexities of dementia. Read on to learn more about the factors you need to consider, steps you should take, and what to expect going forwards.
Understanding Dementia
While being a common term, there's a misunderstanding around dementia. This is because dementia is not a specific disease, like Multiple Sclerosis is, but an umbrella term to discuss a range of symptoms that link to a decline in memory and thinking skills.
The most common type of dementia is Alzheimer's disease, which accounts for 60-80% of cases. Other types of dementia include Parkinson's, Huntington's Disease, Vascular Dementia, and Frontotemporal Dementia.
While some of them overlap, each type of dementia has a different set of symptoms and progression. Understanding the nature of the dementia type that has been diagnosed is crucial for families as it prepares them for the journey ahead.
The Early Stages of Dementia
Early signs of dementia can be difficult to spot in a loved one because they're likely to try and hide them. Signs to look out for include memory loss, difficulty completing familiar tasks, and changes in mood and personality.
If you notice one or more of these symptoms, try not to jump to conclusions and seek medical advice. It's best to start by approaching the topic with your loved one. This can be difficult, so for a successful conversation, it's essential to approach the subject with sensitivity. Be gentle, and don't accuse them. Instead, listen and understand.
Navigating Medical Care
Getting a dementia diagnosis will involve a team of medical professionals, including neurologists, geriatricians, and psychologists. The process will include various diagnostic tests, which work towards determining the type and stage of dementia.
Timeframes for getting a dementia diagnosis can vary depending on age, type of dementia, and healthcare system responsiveness. It can range from a matter of weeks to months and, in some cases, years.
Once your loved one has received a diagnosis, the professionals will help you to understand the next steps and work with you to manage the disease.
Creating a Supportive Environment
In the early stages of dementia, a person is likely to be able to continue living independently. A few modifications may be required around the home to ensure it's safe and comfortable.
Creating a hazard-free home isn't all that will be needed, however. A supportive environment will need to include people who understand the situation at every stage and are able to communicate with the person living with dementia.
You'll also need to work with your loved one to create a routine as soon as possible. This routine will become key in their ability to live at home as the dementia progresses. It should include hobbies and activities they enjoy that provide cognitive stimulation and promote physical activity as these can help slow the progression of the disease down.
Dealing with Behavioural Changes
An unexpected impact of dementia can often be the behavioural changes from your loved one. These often include agitation, confusion, or aggression. Because of their nature, they can be particularly challenging for family and friends to deal with.
Patience and understanding will be vital here, and you will need to adapt your approach to their changing needs.
Anger and frustration often stem from a lack of understanding. Your loved one is likely to be confused as to why they can no longer perform certain tasks or remember things, which can be frightening for them. This fear is expressed in frustration and aggression.
Before you react to these behaviours, take a step back, take a deep breath, and remember their situation. Try to give your loved one space and time to calm down and calmly talk to them; this will likely help you too, as responding in anger is likely to make the situation worse.
When talking it through with them, make sure that you acknowledge their feelings. Where possible, try and use this to find a solution to the problem.
There are several ways you can prevent anger:
- Making sure your loved one gets enough sleep
- Utilise the power of music
- Create a calm environment with blankets, essential oils and pictures
- Help them stay physically and mentally active.
Legal and Financial Planning
Early legal and financial planning is essential. As soon as your loved one receives a diagnosis, you should set up power of attorney, living wills (if they haven't already got them in place), and make arrangements for the long-term care costs.
Planning ahead will help when it comes to making decisions about your loved one's care. It can also allow them to have their say and express their preferences while they are still sound of mind, meaning you won't be left guessing as the disease progresses.
Finding the Right Care Options
The level of care will increase as the disease progresses. There are a number of care options that will be available, each with their advantages and disadvantages.
Options will include in-home care services to specialised memory and long-term care facilities. When assessing your options, you should remember your loved one's preferences and try to ensure the care you choose aligns with their wishes.
You should take into account both the current and future needs of your loved one when searching for care and assistance. Additionally, you should think about their routines and likes and dislikes as this could impact the suitability of certain types of care, and if you're considering a care home, it will impact what type of care home.
Caring for the Caregiver
Caregiving is an emotionally and physically demanding role. Providing care for the caregiver will be just as important as the care for your loved one living with dementia. Caregivers must acknowledge their limits and seek support when needed. This could include joining support groups, seeking respite care services, or consulting mental health professionals.
Respite care and other support for the caregiver is important for many reasons. By taking the breaks needed, you will feel refreshed, which will enable you to provide better support and care for your loved one.
Caring for the caregiver is beneficial for both the giver and receiver.
Specialist Dementia Care and Support
We understand that getting a dementia diagnosis and finding the right care is a complex journey filled with challenges and moments of deep connection. As you navigate this path, it's important to remember that you are not alone. Seeking support, gathering information, and preparing for the future are key steps in providing compassionate care for your loved one while taking care of your own well-being.
If you're navigating dementia and have questions about the progression of dementia and dementia care, don't hesitate to get in touch with us. We are always happy to offer advice and guidance and discuss how our care home can provide expert care for your loved one.
For more resources and support, visit the below resource:
https://www.alzheimers.org.uk/
https://www.nhs.uk/conditions/dementia/care-and-support/help-and-support/
https://www.ageuk.org.uk/northtyneside/about-us/news/articles/2018/dementia-resources/