Alzheimer’s disease: caring for the carers

Alzheimer’s disease: caring for the carers

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Alzheimer’s Disease is a progressive and irreversible brain disorder that is the most common cause of dementia. It compromises memory and cognitive ability, causing distress and suffering to people, often overwhelming their families and carers.

More than 50 million people worldwide are living with dementia with the number is forecast to rise to 152 million by 2050.1

Alzheimer’s, and other causes of dementia, are corrosive conditions as they reduce mental capacity, physical function, cause acute depression and neutralise personality. The emotional, physical and financial pressures on families are immense and more than 50% of carers globally report their health has suffered because of their responsibilities. 1

The number of people with Alzheimer’s doubles every five years and about one-third of people over the age of 85 may be living with the condition.2 Care generally falls on family members and, with an ageing global population fuelling the increase of dementia diagnoses, the number of carers is also rising.

Many reduce their working hours or give up work to care for loved ones and, although hugely rewarding, caring has relentless pressures. A study of informal caregivers by the World Health Organisation and the charity Alzheimer’s Disease International, reported: “Family caregivers of people living with dementia are more likely to develop major depression, anxiety disorders, and physical health disorders among others and they have a higher mortality rate compared to the general population.

“Providing dementia care can become a full-time job without adequate support. Caregivers may be forced to quit work, cut back on work, or take less demanding jobs in order to provide care.”3

Statutory dementia services provide varied levels of support across countries and territories but the vast majority of care, particularly in the early years, falls on unpaid family members. They do it for love but their lives can be changed beyond recognition.

Caring for the Carers

Being an informal carer is a devotion that balances love for a family member with an ever-increasing set of challenges. The physical stress of the daily mechanics of looking after someone is layered with the psychological trauma of witnessing someone’s capabilities decline.

Fatigue and exhaustion from tasks such as personal care and housekeeping are compounded by isolation and loneliness as the burden increases and carers withdraw from their own lives.

They can experience deep feelings of guilt, grief, anger and frustration while routes to practical and emotional support can be poorly signposted and hard to navigate.

Around 80% of all long-term care is provided by spouses, relatives and friends whose role is vital in sustaining formal care systems and Euro Carers – a network of carers’ groups, charities and academia – is calling for increased recognition and support for carers.4

It has ten guiding principles that advocate for better information availability, financial and emotional support, training, employment aid and access to affordable formal care for the army of an estimated 40 million carers across Europe.4

Tips for Alzheimer’s Caregivers

1. Manage your emotions

Carers experience a sweep of emotions ranging from a rewarding close bond unique to two people to exasperation and exhaustion. Experts advise accepting there will be extremes and to focus on being realistic on what you can achieve and being kind to yourself.

Alzheimer’s Society, based in the UK, states: “Remember you can only do so much. Everyone who cares for a person 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.”5

Recognising those emotions and dealing with them gives carers strength to cope with what can be a long and demanding relationship.

2. Don’t be an island

Talk to others and ask for help. It is important to share your feelings with others as it will lessen the burden and provide a different perspective on an issue that maybe causing conflict or anxiety.

Often friends won’t know how to help so it is also good to let them know what you are experiencing and how they might be able to help. Carer support groups are instrumental at providing both assistance and contact with others going through similar experiences.

“You might benefit from simply knowing that you are not alone and that other people understand what you are going through. You might find that it is easier to discuss problems with people who have personal experience of such a problem” says advice from Alzheimer Europe, a grouping of 39 member associations from 35 countries.6

Seek help from your doctor or support groups and consider counselling and respite care as options.

WHO has also developed iSupport, an online knowledge and skills training programme for carers of people with dementia with the aim of ‘preventing or decreasing mental and physical health problems associated with caregiving and to improve the quality of life of those caring for people with dementia’.7

Don’t be afraid to ask for help.

3. Stay Healthy

It is easy to overlook your own needs when you are caring for someone with Alzheimer’s Disease. Finding time to shop for and cook healthy food and to take exercise can become relegated as daily tasks consume the clock and reserves of energy.

But eating regularly and healthily along with staying active and getting enough sleep are essential to ensure you can function as a person and a carer.

Good nutrition is a key element of supporting someone living with Alzheimer’s and carers need to consider their diets and pay attention to their bodies so they don’t become depleted and unable to care optimally.

4. Stay Positive

Recognise that there will be tough times and challenges, and that you cannot solve everything. Carers often feel guilty that they cannot do more or feel powerless to stop the progression of Alzheimer’s, which is made all the more acute when you witness a loved one’s health and cognition deteriorate.

“Try to focus on some of the positive things about caring for and supporting the person with dementia,” advises the Alzheimer’s Society.5 “Take strength from your commitment to them and your fondness for them. Think about your relationship with the person and the fact that you’re helping them enormously, even if they may not always seem to know or appreciate it.”

Making sure you have time for your own interests and hobbies will also help with positivity and relaxation.

5. Plan for the Future

The daily routine can be demanding and critical financial, medical, care needs and legal aspects, such as having Power of Attorney and an up to date will, are often left ‘for another day’. Talking to the person with Alzheimer’s and establishing their wishes before they lose the capacity to communicate their decisions brings order and peace to a relationship.

It helps the carer provide their support with clarity. Local support groups – most have online resources – are a good source of advice and guidance. It also helps to pay attention to your own circumstances to ensure no added pressures compromise your ability to care or your wellbeing.

Creating a care schedule also helps the practical aspects of looking after someone and makes it easier to ring-fence time to pursue hobbies and exercise or simply have time to yourself. A timetable will also help deliver consistency to the person with Alzheimer’s.

 

References:

  1. Alzheimer’s Disease International. Dementia Facts & Figures. Accessed February 2021. https://www.alzint.org/about/dementia-facts-figures/
  2. National Institute on Aging. What Causes Alzheimer’s Disease? Accessed February 2021. https://www.nia.nih.gov/health/what-causes-alzheimers-disease
  3. 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
  4. Euro Carers. Mission & Guiding Principles. Accessed February 2021. https://eurocarers.org/about/
  5. Alzheimer’s Society. Your health and wellbeing. Accessed February 2021. https://www.alzheimers.org.uk/get-support/help-dementia-care/caring-for-person-dementia
  6. 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
  7. 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/
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