The Emotional and Psychological Impact of Dementia on Families

Dementia is a progressive neurological issue that primarily affects cognitive function, causing memory problems and behavioural changes – leading to a huge impact of Dementia on families and loved ones.

The impacts of dementia stretch far beyond the person who has received a dementia diagnosis, often causing devastation and worry to their spouse, family and friends. Additionally, the weight of caring for an affected loved one, sometimes watching them change beyond recognition, can cause significant emotional stress and psychological strain on families.

In this article we will highlight some of the challenges placed on families after a dementia diagnosis and discuss some useful strategies that may help to cope with the stress.

The Emotional and Psychological Impact on Families

According to the World Health Organization (WHO), there are more than 55 million people living with dementia worldwide and almost 10 million new cases of dementia are diagnosed each year. Dementia is currently the seventh leading cause of death and one of the major causes of disability and dependency among older people globally.

When someone is initially diagnosed with dementia, it is common for their family to experience feelings of shock and disbelief about the diagnosis. At first, some people may be in complete denial and want a second opinion.

Relatives may experience a range of emotions in the aftermath of a dementia diagnosis; it is not unusual to experience:

• Feelings of anger or unfairness – it is human nature to try to rationalise and make sense of shocking news such as a life-changing diagnosis. Relatives may experience feelings of anger about the unfairness of the situation.
• Feelings of grief and loss – a dementia diagnosis can trigger anticipatory grief, as loved ones begin to mourn the loss of their loved one as they decline, despite them being physically still here.
• Anxiety and worry about what the future holds – people may begin to panic about practicalities such as who will look after their loved one, the costs and who will pay for it. They may also feel anxious about the impact of their new responsibilities on their own life or relationships.
• Confusion – families may struggle to take in the news and may not understand many of the medical terms and information they are given by doctors.

Once the condition starts to progress, families may begin to experience new challenges as they settle into their new roles as caregivers. Looking after someone with dementia can be tough and it is common for relatives to experience stress, overwhelm and burnout.

• Caregiver stress can happen as a result of both physical exhaustion and emotional pressure. It is common to feel isolated, frustrated and overwhelmed when tasked with routinely caring for another person.
• Caring for someone with dementia can be an emotional roller coaster that encompasses feelings of anger, sadness and guilt, as relatives navigate their loved one’s changing behaviours, mood swings and cognitive decline.
• A 2018 Alzheimer’s Society survey found that 9 out of 10 carers experience stress and anxiety several times a week. Caregiver burnout happens when the emotional, physical and psychological impacts of a person’s caring responsibilities become too much.
• People may struggle to come to terms with the way relationship dynamics have to change, especially when an adult child becomes a carer for their parent or a husband/wife has to start caring for their spouse.

It is common for a dementia diagnosis to put an additional strain on family dynamics. This is especially true in families that are already fractured or estranged. Siblings may begin to argue amongst themselves over decision-making and the way care is being delivered to their parent and they frequently disagree about whether to bring in professionals or make the decision to put their parent into a care home.

It is also common for people caring for a relative who has dementia to experience feelings of:

• Inadequacy as they may feel that they are not doing a good job in their caring role
• Guilt or resentment, especially if they are feeling frustrated or have lost their temper due to the challenges of looking after someone with dementia
• Uncertainty or ambivalence over caregiving decisions (especially if the family are struggling to agree or work collaboratively)

Many carers end up having to make sacrifices in their own personal lives, for example giving up hobbies, turning down invitations to social events or having to reduce their hours at work. This can lead to feelings of loneliness and isolation as caregivers lose their sense of personal freedom and professional identity. Reducing working hours, or in some cases having to give up their jobs entirely, can put financial strain on people, leading to stress and worry over money.

Sometimes caring for a family member who has dementia can become too challenging and it becomes apparent that continuing to help them live independently is untenable. In such instances, family members may experience inner conflict about putting their relative into a home, as well as worrying about the stigma and judgement of others.

Coping Strategies for Families 

When caring for a relative with dementia, it is common for carers to forget to look after themselves as well. Whilst it is tempting to prioritise the person who is unwell, it is also vital to practise self-care and use some coping strategies to deal with the stress and emotional toll that being a carer entails.

Some useful coping strategies include:

• Seeking emotional support
• Practising self-care
• Finding ways to manage stress
• Maintaining positive relationships
• Empowerment through education on the reality of dementia

Seeking emotional support 

Emotional support for carers of people with dementia includes both formal and informal support, which can be delivered one-to-one or in a group setting. If it is difficult to find time to go out to a support group due to intense caring responsibilities, then online support may be a good option.

Dementia support groups and online forums can help to connect caregivers and family members to others who are experiencing similar challenges. Being part of a support group can provide a sense of community and camaraderie. Speaking to others and sharing stories and experiences can help to make sense of conflicting feelings and difficult situations. It can also be a place to learn tips and tricks and get signposted to services that can offer assistance.

Counselling or therapy is an option that is worth exploring if caregivers and families are struggling with the emotional and psychological impact that dementia is having on their lives.

Cognitive behavioural therapy (CBT) is a useful strategy for people who need to:

• Process complex emotions
• Reframe negative thought patterns
• Learn long-term coping mechanisms that can reduce stress and anxiety

Additional options to explore include:

• Dementia-specific counselling
• Family counselling
• Talking therapies

Practising self-care 

Carers often fail to prioritise their own needs either through feelings of guilt or due to a lack of time. Self-care is essential to support our wellbeing, stay in good health and reduce burnout.

Self-care is not selfish. Practising self-care allows carers to stay in good mental and physical shape which helps them to provide the best quality of care and be physically and emotionally available to others.

Self-care tips include:

• Taking breaks when needed – reaching out to friends, family members or professional services for help allows carers to take essential time out to rest, relax, connect with others or take care of important business.
• Eating a healthy, balanced diet and staying hydrated – eating well and drinking enough is essential for people with dementia and their carers. Skipping meals, eating highly processed food, excessive caffeine and alcohol should be avoided. Cooking together and sharing healthy meals can be a great way to connect with family members and friends, even during difficult times.
• Engaging in hobbies or socialising – hobbies and social events provide carers with something positive to focus on, which may reduce isolation and loneliness.
• Practising good sleep hygiene – lack of sleep impacts our mental, emotional and physical health. Anyone with stressful caring responsibilities should ensure that they are getting sufficient sleep in order to function safely and competently. Tips for a good sleep include establishing a routine, sleeping in a comfortable and quiet environment and practising relaxation techniques before bed.
• Keeping up with personal hygiene – it is crucial that carers don’t neglect themselves physically or emotionally. Make time to take a shower or bath every day – this is essential for cleanliness and gives time out to relax and be calm. In addition to the basics such as dental hygiene and hair washing, try to continue with small, personal touches such as nail care, eyebrow shaping or applying make-up that can boost self-confidence and help us retain our individuality.

Finding ways to manage stress 

Caring for someone with dementia can put people under extreme pressure which can lead to stress. Tips to manage these feelings include:

• Regular exercise – staying active and getting exercise boosts endorphins and supports mental and physical health. Exercise such as running, swimming or boxing can also help us to channel and process complex feelings including anger and frustration.
• Relaxation techniques – mindfulness, meditation or yoga can reduce stress, help with emotional regulation and provide a sense of calm and control.
• Respite care services – also called replacement care, respite care allows carers to take a break and recharge. There are many different types of respite care arrangements including day centres, a temporary stay in a care home or at-home care.

Maintaining positive relationships 

Family dynamics can be complicated at the best of times, but when a devastating diagnosis is thrown into the mix old arguments, resentment and blame can come to the fore.

Having dementia can make it difficult to maintain good relationships as it can cause personality and behavioural changes including:

• Aggressive outbursts
• Loss of inhibition
• Agitation and restlessness
• Trailing, following and checking
• Hoarding tendencies

To try to maintain a positive home environment and keep relations positive, caregivers and families should try to:

• Focus on the person rather than the condition
• Try to maintain a connection between family members
• Let go of old resentment
• Understand that some things are a symptom of the dementia and not a personal attack
• Cherish moments of clarity and joy

Tips for communicating with a person who has dementia include:

• Speak clearly and use simple language and short sentences
• Be patient
• Use active listening techniques (such as keeping eye contact and repeating back what has been said to check understanding)
• Maintain a neutral or positive tone of voice and body language (avoid getting defensive)
• Provide simple choices
• Avoid patronising or ridiculing
• Engage in familiar activities
• Make time to have fun together and try to maintain an emotional connection

Empowerment through education on the reality of dementia 

Dementia is a complex and often misunderstood condition that still has a lot of misconceptions and stigma attached to it. Education and advocacy can help people to understand the reality of the condition, anticipate changes in their loved ones and make plans and informed decisions.

Although a dementia diagnosis may seem daunting and scary at first, learning about the signs, symptoms and different stages of the condition can reduce the fear of the unknown and help both families and the patient themselves to prepare for what is to come.

The Role of Professional Support and Services

Professional services and healthcare providers can deliver vital support to people with dementia and their families. They can provide expert advice and discuss treatment options; healthcare workers may also be able to signpost people to emotional, practical and financial support services.

Local authorities (including social workers and health and social care professionals) can also provide support to individuals with dementia and their families. Local authorities may provide practical help, for example providing home visits or adaptations to the home, as well as tailored support that helps with the emotional and psychological impact of dementia such as:

• Organising respite care so that carers can have a break
• Support from specialists (such as a dementia nurse)
• Counselling and support groups
• Community resources (day activity programmes etc)

Local authorities are able to provide a needs assessment for both people with dementia and their carers. The outcome of these assessments determines the level of support that a family receives. It is important to give honest answers to the questions in the needs assessment, even if it feels uncomfortable. It may involve a carer discussing how they are coping with their role, their levels of depression and how they are balancing their new role with other commitments.

Innovations in Dementia Care and Support

Technological advancements in dementia care and support exist to make life easier for people with dementia and to take some of the pressure off their carers.

Innovations in dementia care and support include assistive technology such as:

• Automatic pill dispensers
• Safety measures for the home
• Security cameras, ring doorbells and trackers
• Automatic lights and sensors

Technology can also help to alleviate some of the loneliness and isolation that both patients and their carers can experience, helping them to keep in touch with friends and family, connect with the outside world and keep up with current events and entertainment. This includes:

• Mobile phones
• Streaming services (such as Netflix, iPlayer)
• Social media platforms
• Video chat
• Online games, puzzles and quizzes
• Digital photo frames

Getting ready to go out of the house and attending appointments can be challenging when a person has dementia, especially if they struggle with additional mobility issues or disabilities. Telehealth services allow patients and their caregivers to access care and education from the comfort of their home using a computer, phone or tablet. This may include video appointments with doctors or other dementia specialists, enrolling in online education programmes and installing remote monitoring systems.

Charities such as the Alzheimer’s Association, Alzheimer’s Society and Dementia UK offer a wealth of online resources, including informative articles, factsheets and online communities. Various non-profit organisations across the world have pledged millions of pounds into funding research initiatives that aim to improve the lives of dementia patients and accelerate the global progress of new treatments and interventions, with the hope of one day finding a cure.

Conclusion 

The practical and physical challenges of caring for someone with dementia are widely understood, but the psychological and emotional impacts of a dementia diagnosis are sometimes overlooked.

It is essential that families and carers acknowledge the complex feelings they experience as a direct result of their loved one having the condition. Relatives also need to continue to practise self-care by exercising, eating well, getting enough rest and looking after their mental health as they settle into their new role as carers.

Increased awareness and education will result in a better understanding and reduced stigma around caring for someone with dementia. We encourage you to use all available resources to learn more about dementia and the effects it can have on families and the wider support systems available.