Looking after a person with dementia can be difficult and hard with various emotional and psychological challenges for partners, carers and families. Carer stress is widely self-reported and documented in various national and international research studies alongside reports into the experiences of informal carers supporting people living with different types of dementia.

Stress caused by becoming an informal carer

Informal carers are people who may be partners, family members or people close the person living with dementia.  Informal carers of people with dementia are often seen to be providing significant levels of care or support during different stages of dementia.  Caring in dementia may cause emotional strain or psychological distress which often leads to carers experiencing high levels of stress.  Carer stress has a negative impact on the ability to cope and manage dementia.  Carer Stress can adversely affect the quality of life for both the person with dementia and carer.  High levels of carers stress can result in breakdown in caring as well as poorer carer health and wellbeing.

Understanding the key stressors for Carers

It is important to consider what may contribute to carers stress and to know the contributing factors which may cause carers to experience deterioration with their own mental health.  Stress can be experienced for carers at different points and throughout the experience of living with a diagnosis of dementia.  

Carer Stress may be experienced following the impact of a dementia diagnosis.  Adjustment and acceptance of the diagnosis of dementia may be difficult for carers for several reasons. Stress may be experienced where there is increased feelings of sadness, guilt, loss, frustration, or anger towards dementia. Worry and anxiety can be prominent when thinking about the future, what may it hold for their partner or family member diagnosed or how they will manage or cope with dementia in their lives in the times ahead.  

Changes in roles within the household

There can be changes in roles, relationships, and identity with the onset of dementia. This can lead to carers taking on responsibilities previously held by their partner or having increased responsibilities which may cause increased tiredness, distress, tension, or strain. 

The manifestation of stress due to difficulty of understanding a diagnosis

Carers may have difficulty understanding the diagnosis of dementia or the symptoms including the progression of the disease.  Consequently, carers may feel stressed when coping with the symptoms that their loved one is presenting with or the development or emerging new symptoms as the condition progresses.

Stress created through planning for the future

Carers stress can be seen through changes in their financial circumstances or having to make decisions around the personal circumstances in planning for the present and future with the onset of dementia. Carers can be managing multiple roles and commitments including family, work or caring for other family members.  Carers are often managing their own physical and mental health and increased stress can intensify and comprise their own health and wellbeing and impact on their caring abilities. 

Inadequate support

Carer stress can be experienced with inadequate access to information and support or service provision.  Carers often state that they do not know where to turn to for support following diagnosis.  They often feel alone and isolated in managing dementia and feel unprepared in their caring roles. Fragmented or poor access to formal care provision can result in carers feeling frustrated, angry, or tired in their search for appropriate care for the person they are caring for.  Inconsistency, lack of coordination or poor continuity in service provision can lead to carers experiencing  a lack of understanding, confusion and added stress when they are trying to access or need formal support to help them care for the person close to them.

Managing and coping with the stress.

Carers need to be aware and informed from diagnosis of the high risk of carer stress with the impact of living with dementia.  Carers should be given access to information, advice, and support for managing their own emotional and psychological wellbeing to sustain and maintain their desire to care for their relative or family member through their experience of dementia.   Carers needs are of paramount importance to the person who is diagnosed with dementia. Addressing the mental needs of carers should be offered within the area of post diagnostic support in dementia.  Services need to be closely aligned to the needs of carers in conjunction with the needs of people with dementia.   

Consider your options fully

An array of organisations, activities, resources, and groups should be considered to help manage stress and promote good mental health in carers. It is important to offer early intervention for carers with opportunities for education, training, and information on understanding, managing and coping with dementia.   A course or information should discuss and offer ways of managing emotions, caring for self, focus on healthy living and lifestyle or discuss ways of maintaining community participation. 

Dedicated care groups can help

Carers should be offered access to dedicated carer support groups or organisations which focuses on their specific needs.  Carers organisations often have a host of services, resources, and information to inform, engage and support carers to access statutory and local community services for example welfare rights, social care or dedicated carer support groups for the opportunities of peer support.  These services and groups can help carers to feel informed, empowered and connected to others in similar situations. This can help carer to develop and maintain confidence to continue in their caring role as exploring opportunities for respite breaks  with carers having opportunities of time free from their caring responsibilities  or to be able to balance caring role with engaging in activities of work, social or leisure.

Local information is key

Carers should have knowledge and information on community dementia specialist support, these may include Admiral Nurses, local dementia services like Dementia Matters who have specialist knowledge and  understanding of the needs of carers and  who offer the emotional, practical, social or respite support to help carers.  Carer health checks should be offered in primary care with opportunities of mental health screening and onward referral to opportunities of psychological therapies or specialist mental health services if required.

More than one approach should be used to assist carers

Managing carer stress should involve so many different approaches by a multitude of professionals, services, and organisations. It is important for early intervention with carers with opportunity for dementia specialist support.   Having access to a dedicated dementia specialist professional/worker/ service to support carers through the experience will ensure that stress can be managed in a timely and responsive manner so as to avoid crisis and breakdown for both  the carer and those close to them.

Tailoring the support is key

It is important to tailor and personal interventions to manage stress for each individual carer.  Carers experience their own personal stressors unique to  individual experience of how caring in dementia impacts on their own lives  and know personally how the area of stress can affect their health and wellbeing or relationships with others. Managing stress can offer carers the emotional resilience and confidence to feel a sense of wellbeing and self-worth to be able to continue to care for the person they wish to support throughout the experience of dementia and beyond in their lives for the future.

Dementia Matters and Admiral Nurses

Admiral Nurses are present in providing dementia specialist support to carers here at Dementia Matters to help managing and coping with stress in their lives associated caring in dementia. The Admiral Nurse works alongside and closely with all types of informal carers including partners and family carers to support them manage the different stressors linked to caring through their personal experience of living or being affected by dementia.   

Helping with positivity

The Admiral Nurse helps carers cope positively with dementia in the present and face the future with confidence and skills to manage the challenges or complexities which dementia can bring to their lives for the future.  The Admiral Nurse will offer and discuss various strategies, support options, resources, and information to understand and manage stress and to ensure carers are looking after themselves equally as well as the person they care for.   The Admiral Nurse offers a collaborative approach to carers in managing stress which will involve different types of services and organisations to ensure stress in managed in safe and effective way for carers.  Building an array of support networks for carers is central to caring coping and managing the stress with different situations or circumstances.

We are here

If you would like further support or advice at this stressful time please contact us via your preferred method and we will endeavour to support you in everyway we can.