Caring for your loved one with early-stage Alzheimer’s disease is a very important role as you are key to providing the support and care they need, while also helping to plan for the future.
In the early stage of Alzheimer’s, most people can function independently. You will find that the person living with dementia is still able to go to work, drive and even maintain an active social life.
“Early stage” Alzheimer’s refers to people who are diagnosed with Alzheimer’s disease or a related disorder and are in the early stages of the disease which can last for years.
A diagnosis of early-stage Alzheimer’s disease doesn’t just affect those with the disease, it also affects everyone who loves and cares about them.
What is Your Role As A Primary Caregiver?
As a primary caregiver, you may find yourself in a new and unfamiliar role where you may be unsure of where to go for information, or you may feel anxious about what to expect as the disease progresses. You may also feel concerned about your ability to support the person living with dementia. We are here to tell that what you are feeling is completely normal.
With an early diagnosis, you have the opportunity to make decisions about the future with the person diagnosed with dementia, including financial, legal and long-term care planning.
The person living with dementia can take advantage of treatments that are available to them, participating in clinical trials as well as benefiting from resources and local support services. Taking advantage of these benefits can help to reduce anxiety about the future and can lead to better outcomes for all involved.
What is The Role of a Secondary Caregiver?
The role of a secondary caregiver is not limited to the next of kin or close family members. Secondary caregivers can also include friends, neighbours or even long-distance relatives.
If you are providing support as a secondary caregiver, it may be difficult to determine the exact level of care that is needed as you are unable to make the necessary observations to make decisions.
However, whenever possible, try to connect with others in a dementia support network to share support or to make arrangements to meet with the support network to discuss the level of care that you can provide.
How to Find a New Balance as a Caregiver For Someone with Early-stage Alzheimer’s
A challenge that caregivers may face is not knowing the level of assistance that is needed or to give to a person with early-stage dementia as they are still primarily independent. You can, however, determine whether some tasks have become more difficult to manage and implement a daily routine. For example, you can both create a daily schedule so that everyone is on the same page which takes away any feeling of uncertainty.
As a caregiver, the person living with dementia will appreciate your support with the everyday tasks, as it can offer the opportunity for he or she to develop coping strategies to maximise their independence.
We understand that every relationship is different, therefore it is up to you to decide how you can find the right balance between interdependence and independence which can lead to an increase in confidence for the both of you.
To help you determine how, and more importantly, when to provide the most appropriate support to a person living in the early stage of dementia, we have put together 6 helpful tips to know how and when to offer support to a person living with dementia:
1. Always consider their safety first
It is always good to determine whether there is an immediate risk to safety for the person living with dementia when they are performing tasks alone. If there isn’t an immediate risk of injury or harm, it good to encourage them while continuing to provide assistance and supervision where necessary.
2. Try to avoid any stress
To avoid unnecessary stress, we recommend prioritising tasks that will not cause frustration for the person living with dementia. To get a better understanding of this, ask for their participation in outlining their weekly needs and use this to organise a list of things to do. From this, you will be able to determine the tasks that they can manage independently and the tasks that will require assistance.
3. Always make positive assumptions
It is always better to assume that the person living with dementia is capable of completing tasks independently. If you sense the frustration in them, try to identify the cause of this before you intervene.
It is also better for both of you to focus on his or her current needs at present, rather than dwelling on the future. Doing things help you to feel less frustrated and overwhelmed while giving you the ability to cope with the daily tasks by taking each day, one step at a time.
4. Develop a helpful signal
Between the two of you, it is good to create a phrase that you can use to confirm whether the person living with dementia is comfortable receiving your support.
For example, you may agree to use a phrase like “Is there anything that I can help you with?” or they can give you a knowing nod to let you know that the person with dementia is having difficulty.
5. Have frequent conversations
The best way to know how and when to provide support is to ask the person living with dementia directly. It is important, for your wellbeing, that you understand what they need or even the frustrations that they may be experiencing, as it alleviates any frustrations that you may experience from making assumptions. Once you have had the conversation, make a plan that you can both work with going forward.
6. Form a working team together
By finding activities that you can both enjoy together, you can form a good partnership that helps to keep communication between the two of you to be open and honest. This then allows you to find out from the person living with dementia, whether the level of assistance is adequate and comfortable enough for them.
How to Maximise Independence
While the early stage of dementia is experienced differently by each person, it is not uncommon that a person in the early-stage to need reminders to help them with their memory. As a caregiver, you may find it necessary to take the initiative to determine how you can support.
For example, he or she may need your assistance with:
- Booking appointments
- Attending appointments
- Remembering names or words
- Recalling familiar faces or places
- Managing their finances
- Keeping track of their medications
- Planning and organisation
- Getting from one place to another
To help them remain as independent as he or she can be, we recommend focusing on the person’s strengths and more importantly, keeping the channel of communication open while continuously working as a team.
Understanding The Person Living With Dementia’s Emotions
Emotions such as fear and denial are common for individuals living in the early stage of the disease, yet being able to talk about these emotions together can help you both to work through the difficult feelings that he or she may experience, and spend more time enjoying the present moments with one another.
Here are 4 helpful ways that you can help the person living with dementia work through their feelings of denial and fear:
- Encourage the person to share his or her feelings in a diary. This can remain private if he or she prefers, however it is an excellent way for the person with dementia to feel safe to express how they are truly feeling without needing to put on a brave face.
- Spend time doing activities that are enjoyable and meaningful for both of you. Not only will this increase your bond and strengthen your relationship, but it also allows you to focus on the things in life that you both enjoy together.
- Attending an Alzheimer’s support group that is set up to support both of you.
- Having continuous conversations about individual expectations, questions and any pressing concerns.
Providing support and caring for a person living with Alzheimer’s disease or related dementia is an ongoing and emotional process. As a caregiver, you may feel overwhelmed by emotions that range from fear to hope or even anger.
You’ll find that emotions can often be triggered by thoughts about how the diagnosis will impact your future and even your present circumstances. Learning to recognise these emotions may help you to move forward and help the person living with dementia to have the best possible life as possible.
We have listed 5 emotions that you may experience as a caregiver of someone with dementia below:
- You may experience denial
In the first instance, the diagnosis may be difficult for you to accept. Therefore experiencing short-term detail is a perfectly normal and healthy coping mechanism that gives you the time to adjust. However, staying in denial for too long can prevent you and the person with the disease to make the important and very necessary decisions about the future.
Long-term denial can delay the person living with dementia’s ability to have a decent quality of life. If you are experiencing denial or extreme difficulty with coming to terms with the diagnosis, we recommend seeking help from a support group as soon as possible. Your ability to help your loved one will be hindered until you can come to terms with the diagnosis.
- You may feel fearful
It is normal to feel fearful about the progression of the disease and the challenges that you may face with it. You may also feel fearful about your ability to provide adequate care which as. the result, can be very overwhelming to you emotionally, ultimately preventing you from being able to focus on the present.
- You may feel stressed or anxious
The uncertainty about what to expect as the disease progresses can cause you to feel stressed and/or anxious about the future. You may also experience stress and/or anxiety at the thought of the level of support that the person with the diagnosis will need from you.
- You may experience anger or frustration
The most common response to diagnosis is anger. This is usually due to the feeling of a loss of control over your future. You may feel resentment about your role as a caregiver and how this new role will affect your life.
- You may feel an overwhelming sense of grief or depression
Grief and depression can occur as an overwhelming feeling of loss over your relationship with the person diagnosed with dementia. It is normal to feel sadness over the sense of loss. However, if you are feeling depressed and hopeless, we strongly recommend seeking support for your mental health and wellbeing.
Taking care of yourself
It is important to take care of yourself when caring for someone with Alzheimer’s. Getting involved in your favourite activities enhances your sense of well-being and can help to reduce your stress levels.
We recommend spending time with your friends and family, maintaining a healthy and balanced diet and engaging in physical activity should feature in your list of self-care priorities.
Additionally, we have put together 8 tips on how to maintain your health while caring for someone with dementia:
- Stay healthy through a balanced diet, regular exercise and regular visits to the doctor to check on your physical and mental well-being.
- Schedule in ‘you-time’. It is important to schedule some time to take for yourself. Other than maintaining an active lifestyle, we recommend scheduling support sessions to allow you to talk about your emotional well-being in confidence.
- Build a support network with other caregivers. Having a support system will greatly minimise your stress-levels as the disease progresses. Having a support system in place will give you the network of individuals who truly understand what you are going through, to lean on in times when you need it the most.
- Ask for help. Caregivers often find it difficult to ask for help, until it is too late. Don’t wait too long to ask for help. If you find that help is offered even without asking for it, accept it. You can’t provide the necessary care if you aren’t well cared for.
- Try not to take things personally. As symptoms of the disease progress, you will find that the person living with dementia can forget important dates or commitments. Try not to take this personally and understand that this is not a reflection of his or her character.
- Rest, rest and more rest. It is important for your mental well-being that you allow yourself the time needed to rest. Caring for someone takes its toll on the human body and mind, therefore you need to take some time out to recharge when you can.
- Stay engaged. To avoid ‘losing yourself’ ensure that you continue to be involved in activities that are important to you. and enhance your sense of wellbeing.
- Educate yourself on the disease. The more you educate yourself about the disease, the more confident and prepared you may feel about the future and your ability to cope and provide support as the disease progresses.
Knowing what to expect and putting plans in place can be empowering for you and the person with dementia.