Alzheimer’s disease is a progressive and irreversible brain disorder that is the most common cause of dementia. It impairs memory and cognitive abilities, causing suffering and anxiety for individuals and often overwhelming families and caregivers.
More than 50 million people worldwide live with dementia, and the number is expected to rise to 152 million by 2050.
Alzheimer’s and other causes of dementia are degenerative conditions that reduce mental capacity and physical function, cause acute depression, and diminish personality. The emotional, physical, and financial strain on families is immense. More than 50% of caregivers worldwide report that their health has deteriorated due to their responsibilities.
The number of people with Alzheimer’s doubles every five years, and it is estimated that approximately one-third of people over 85 live with the condition. Care typically falls to family members, and with a globally ageing population driving the increase in dementia diagnoses, the number of caregivers is also rising.
Many reduce their working hours or forgo work to care for loved ones, and although caregiving can be deeply rewarding, it brings relentless pressure. A study by the World Health Organization and Alzheimer’s Disease International reported: “Family caregivers of people living with dementia are more likely to develop serious depression, anxiety disorders, and physical health problems, and have a higher mortality rate compared to the general population.”
“Without adequate support, dementia care can become a full-time job. Caregivers may be forced to stop working, cut back on their jobs, or take a less demanding role in order to provide care.”
Legislated dementia services offer varying levels of support across different regions and countries, but the vast majority of care, particularly in the early years, falls on unpaid family members. They do so out of love, but their lives can be entirely transformed.
Care for Caregivers
Being an informal caregiver is a kind of devotion that balances love for a family member with an ever-growing set of challenges. The physical stress of caring for someone is combined with the psychological trauma of witnessing a loved one’s abilities deteriorate.
Fatigue and exhaustion from tasks such as personal care and household chores are exacerbated by isolation and loneliness as the burden increases, and caregivers withdraw from their own lives.
Caregivers may experience deep feelings of guilt, grief, anger, and frustration, and it may be unclear how to gain practical and emotional support.
Around 80% of all long-term care is provided by spouses, relatives, and friends, whose role is crucial in maintaining formal care systems. Euro Carers – a network of care groups, charities, and academia – calls for increased recognition and support for caregivers.
The network has ten guiding principles advocating for better accessibility to information, financial and emotional support, training, employment support, and access to affordable formal care for the estimated 40 million caregivers across Europe.
Tips for Alzheimer’s Caregivers
- Manage Your Emotions
Caregivers experience a wide range of emotions, from a joyful, close bond to exhaustion and fatigue. Experts recommend accepting that there will be extremes and focusing on being realistic about what you can achieve, while also being kind to yourself.
Alzheimer’s Society, based in the UK, says: “Remember, you can’t do everything. Everyone caring for someone with dementia will need help at some stage. Focus on what you can do and try to accept that you may need help with some things.”
Recognising and managing these emotions gives caregivers the strength to cope with what can become a long and demanding relationship.
- Don’t Be an Island
Talk to others and ask for help. It’s important to share your feelings with others, as this will lighten the load and provide a different perspective on issues that might cause conflict or anxiety.
Often, friends don’t know how to help, so it’s also good to tell them what you’re going through and how they can assist. Carer support groups are essential for both receiving help and connecting with others who are going through similar experiences.
“You may benefit simply from knowing you’re not alone and that other people understand what you’re going through. You might find it easier to discuss problems with people who have personal experience of such an issue,” according to advice from Alzheimer Europe, a group of 39 member associations from 35 countries.
Seek help from your doctor or support groups, and consider counselling and respite care as options.
The WHO has also developed iSupport, an online training programme for knowledge and skills for caregivers of people with dementia, aiming to “prevent or reduce mental and physical health problems related to caregiving and improve the quality of life for those caring for people with dementia.”
Don’t be afraid to ask for help.
- Stay Healthy
It’s easy to neglect your own needs when caring for someone with Alzheimer’s disease. Finding time to shop for and cook healthy meals, as well as exercising, can be overlooked as daily tasks take time and energy.
But eating regularly and healthily, combined with staying active and getting enough sleep, is vital to ensure you can function as a person and caregiver.
A good diet is a key factor in supporting someone living with Alzheimer’s, and caregivers must consider their own diet and pay attention to their bodies to avoid becoming too tired and incapable of providing optimal care.
- Stay Positive
Understand that tough times and challenges will arise, and that you can’t solve everything. Caregivers often feel guilty for not doing more or feel powerless when it comes to stopping the progression of Alzheimer’s, which becomes even harder when witnessing the elderly person’s health and cognitive abilities decline.
“Try to focus on some of the positive aspects of caring for and supporting the person with dementia,” advises Alzheimer’s Society. “Draw strength from your commitment and love for the person. Think about your relationship with the person and the fact that your help is incredibly meaningful, even if the person may not always recognise or appreciate it.”
Ensuring you have time for your own interests and hobbies will also promote positivity and relaxation.
- Plan for the Future
The daily routine can be demanding, and important financial, medical, caregiving, and legal aspects – such as having a power of attorney and an updated will – are often postponed to “another day.” Talking with the person with Alzheimer’s and establishing their wishes before they lose the ability to communicate their decisions will lead to order and peace in the relationship.
It helps the caregiver to provide their support with clarity. Local support groups – most of which have online resources – are a good source of advice and guidance. It also helps to be aware of your own circumstances to ensure that no additional pressure jeopardises your ability to care or your wellbeing.
Creating a caregiving schedule also helps with the practical aspects of caring for someone and makes it easier to allocate time for hobbies and exercise or simply for yourself. A timetable also helps create stability for the person with Alzheimer’s disease.
References:
- Alzheimer’s Disease International. Dementia Facts & Figures. Accessed February 2021. https://www.alzint.org/about/dementia-facts-figures/
- National Institute on Aging. What Causes Alzheimer’s Disease? Accessed February 2021. https://www.nia.nih.gov/health/what-causes-alzheimers-disease
- World Health Organisation and Alzheimer’s Disease International. Supporting Informal Caregivers of people living with dementia. 2015. Accessed February 2021. https://www.who.int/mental_health/neurology/dementia/dementia_thematicbrief_informal_care.pdf
- Euro Carers. Mission & Guiding Principles. Accessed February 2021. https://eurocarers.org/about/
- Alzheimer’s Society. Your health and wellbeing. Accessed February 2021. https://www.alzheimers.org.uk/get-support/help-dementia-care/caring-for-person-dementia
- Alzheimer Europe. Self-help organisations. Accessed February 2021. https://www.alzheimer-europe.org/Living-with-dementia/Caring-for-someone-with-dementia/Coping-with-caring/Self-help-organisations#fragment3
- World Health Organization. WHO iSupport : a programme for carers of people with dementia. Accessed February 2021. https://www.who.int/mental_health/neurology/dementia/isupport/en/
