How does dementia affect you emotionally?

Learning about how dementia can affect you emotionally

Dementia is an extremely difficult diagnosis to adjust to, both practically and emotionally, with its impact reaching far beyond the person experiencing it. Here, we are exploring the true impact of a dementia diagnosis, its effects on loved ones, how it affects self-esteem, what to say and what not to say, how to help someone cope with this diagnosis, how to manage emotions through all stages of dementia, practical steps to take while dealing with the after-effects of this diagnosis, and where to seek support if you need it.At Home Instead, our aim is to help people age positively and in place by bringing expert care to their home. For nearly 20 years, we have been providing the highest standard of care, and creating industry-leading training programmes for our Care Professionals that are accredited by nursing and medical professionals. Today, we are the world’s largest global domiciliary care network, supporting over 100,000 older adults with personalised, tailored care at home. So whatever questions you have about dementia, we can help.

How can carers manage emotions about a dementia diagnosis at home? 

For family members who are caring for a loved one, a number of complex emotions may arise when someone is diagnosed with dementia. These could include things like:

• Sadness – anticipating what will inevitably happen to a loved one 
• Denial – an inability to picture what the future holds 
• Shock and confusion – an inability to understand the medical issue 
• Frustration – considering the unfairness of the situation 
• Guilt – feeling bad for becoming frustrated at symptoms your loved one cannot control 
• Stress and overwhelm – trying to balance caring duties with other responsibilities
• Anxiety – attempting to make decisions about what is best for your loved one
• Fear – picturing negative future scenarios 
• Helplessness – realising nothing can be done to slow the progression 

You may also experience feelings of grief at losing the ability to communicate with your loved one as you once did. Many people describe a sense of loss when a loved one has dementia, even when they are still alive, and the timing of this can differ for each person throughout the different stages of dementia. Know that feelings of anticipatory grief are normal, and you can seek help in the form of therapy or counselling if you struggle with this.  It may feel helpful in the moment to bury emotions and focus on the practical needs, but caregivers should find ways to effectively manage their emotions following a dementia diagnosis in order to process their feelings and avoid them building over time. This can lead to carer’s burnout, or emotions surfacing at inopportune times. Managing your emotions following a dementia diagnosis could mean prioritising self-care, doing regular mindfulness practices, joining a support group, speaking to someone you trust, celebrating small moments of joy, and utilising respite services regularly to have a break. Also, it is much easier said than done, but try to enjoy the moments you have left with your loved one. Remember, life expectancy for someone with dementia is typically between 4 and 8 years, but depending on the diagnosis they could live for up to 20 years, so it is important not to ruminate too much about what could happen in the future.You may also find having a sense of humour about the situation can help you to process difficult emotions. While you should never laugh at the person’s inability to understand or remember things, it is understandable and perfectly OK to laugh and smile with them. 

How can a dementia diagnosis affect someone’s self-esteem?

Although a dementia diagnosis does not mean a person will immediately lose all ability to continue with daily routines and enjoyable activities, it often has an immediate negative impact on an individual’sconfidence and self-esteem. Studies have suggested people with dementia who suffer symptoms like memory loss, an inability to recognise things, difficulties communicating, and issues with motor function may experience a loss of confidence and self-esteem as a result. A 2021 study also confirmed dementia can greatly impact a person’s identity. As cognitive abilities decline, tasks that were once simple may become more challenging, leading to frustration and a sense of inadequacy. This loss of independence and need for increased assistance can make those with dementia feel less capable, which undermines their self-worth and causes self-esteem issues. Social interactions can also cause shame and anxiety, which may result in withdrawal from others, further impacting their self-esteem. It is important to help those with dementia maintain their self-esteem as much as possible, as studies have found that this, alongside factors such as hope and social support, can help them to cope, adjust, and adapt to life with a chronic illness.

What should (and shouldn’t) you say to a loved one with dementia?

Discussions with a loved one who has dementia can feel overwhelming, and you may need to be more careful with what you say than in most conversations. It is important to employ empathy, patience and understanding, but here are some other tips that could help:

• Always use simple, clear language and speak slowly to give them time to process any information you are offering. 
• Remember to acknowledge their feelings and experiences. Even if they are not making much sense, the important thing is that they feel seen and heard. 
• Avoid correcting them, arguing over details, or saying “I just told you that”, as this will not help them to retain the information. Repeat yourself calmly, or try to redirect the conversation to a more positive topic. 
• Reminisce about pleasant memories if the person responds well. When doing this, it can help to avoid asking them if they remember certain things, and instead prompt them by telling them what you remember. If they want to, they can then add to the conversation with their own memories. 
• Use visual aids or gestures to help them understand what you are trying to communicate. 
• Avoid using sarcasm, as this could be confusing for them. 
• Do not use belittling or dismissive language.
• Refrain from bringing up topics that cause distress or confusion, such as recent losses or changes in their condition. 
• If they have a question about someone who has died, you could encourage them to talk about the person they are asking about, as this can be comforting, distracting, and could lead them to the realisation on their own. If they continually ask the question, do not avoid answering as this could make them more anxious. 
• Consider the greetings you use for a person with dementia. For example, instead of asking them what they did earlier in the day (which they may not remember), talk about what you did earlier so they can interject with their own details if they feel comfortable. Similarly, saying hello and providing helpful context could be a better solution than asking them outright if they remember who you are. 

You may find more helpful tips in our article: How To Talk To Someone With Dementia

What practical steps need to be taken after a dementia diagnosis?

Even with emotions running high after adementia diagnosis, there are still several important practical steps that should not be postponed. Your GP can usually talk you through some of these at the time of diagnosis, but Dementia UKrecommends: 

• Organising a Care Needs Assessment to establish the person’s care needs 
• Creating a comprehensive Care Plan involving medical professionals and caregivers
• Applying for any financial support needed. You may find our article on this useful:Paying For Care: Who Pays What?
• Organising any legal and financial affairs, including wills and power of attorney
• Notifying the DVLA and any other relevant organisations that should be told 
• Establishing the person’s wishes for their future care and healthcare 
• Deciding onhome care or a care home – if they would prefer home care, ensure the living environment is safe and optimised by removing hazards and making sure they have everything they need to maintain as much independence as possible
• Arranging for appropriate medical care and support services to visit 
• Telling the wider network of family and friends so they can provide support 
• Telling your employer (if you will be caring for your loved one) so they understand the additional burden you carry and can potentially make allowances for your situation 
• Look into local services and support that could make things easier for both of you
• Create a calendar with any medical appointments and a medication schedule to keep on top of everything 
• Enlist the help of home care services. You may find useful information on how to do this in our article: How To Choose & Arrange Home Care Services
• Find care organisations to help with respite care when you need it – you can find more information on this in our article: Considerations For Dementia Respite Care

Where can families get support after a dementia diagnosis?

Families coping with adementiadiagnosis should avoid attempting to handle everything on their own, as there are many options for support. Local dementia organisations provide resources, support groups, educational programs and more to make life easier for caregivers during this tough time. 

You can start by reaching out to the person’s GP or other healthcare professionals involved in their care so they can connect you with relevant community services. They may also recommend counselling if you feel you could benefit from more emotional support or to learn coping strategies while caring for a loved one with dementia. 

Respite care (whether using visiting home care, day care centres or another form of respite) can be especially helpful to caregivers of someone with dementia, providing temporary relief which enables them to recharge and maintain balance with their own life responsibilities. By accepting help, families of those with dementia can find comfort, guidance and practical assistance throughout this difficult time in life.

Some other helpful resources include Alzheimer’s Society’s helpline for anyone affected by dementia, which you can call on 0333 150 3456. Also,Dementia UK’s Admiral Nurse service provides specialist dementia nurses for additional support and knowledge. You can learn more about this service on the Dementia UK website. 

If you would like to bring in home care services to help look after a loved one with dementia, you can reach out to your local Home Instead office to discuss your needs. Our Care Professionals are the best of the best, and highly trained to deliver the services you need, including specialist dementia care. No matter what type of home care you are looking for, we can provide a tailored service that suits you or your loved one.

We’re an award-winning home care provider and part of a worldwide organisation devoted to providing the highest-quality relationship-led care for older people in their own homes. Arranging care for yourself or your loved one shouldn’t be stressful, so whatever questions you would like answered, feel free to reach out to the Home Instead team to discuss your needs.