Alzheimer Scotland – National Dementia Carers Action Network (NDCAN)
Caring for a Loved One with Dementia – The Impact on a Female Carer: a personal perspective
As a member of the National Dementia Carers Action Network (NDCAN) I have been privileged to meet and campaign alongside some truly inspirational carers.
Many men fulfill a caring role and are affected by many similar issues as female carers. There is, however, a perceived societal expectation that women will take on this role. Surveys of carers (for all conditions) indicate that largest proportion of carers are women e.g. the State of Caring Survey 2018 reports it as 81%.
Work for the recently published Fair Dementia Care Commission using statistics from Dementia UK indicated that, in Scotland, family carers, a significant number of whom are women), provide 134m hours of unpaid care, saving the public purse an estimated £1.16b annually.
Since joining NDCAN I have met many carers. Each one has their own story of their journey caring. Dementia affects each individual carer and their loved ones differently. In terms of the impact that providing care has on the caregiver there are, however, a number of issues that affect almost all of us.
While facilitating workshop sessions with Alzheimer Scotland carers groups around Scotland in 2017-18 to develop a resource ‘For Carers, By Carers: The NDCAN Resilience Project’ funded by the Life Changes Trust, almost without exception the carers felt unappreciated. Many had to give up employment and other activities that defined them as individuals. This caused feelings of social isolation and impacted on mental and physical health. For some their only opportunity to socialize was weekly carers meeting which they could attend with their relative.
My own experience as a carer for both my parents began in 2010 when, after a road accident my mother sustained a serious injury to her wrist that required reconstructive surgery. A subsequent assessment indicated that she was in the early stages of Alzheimer’s disease.
This made me realise that the way I defined myself, as a wife, mother and working full-time as a teacher would change and I would have to take on the additional role of carer. This made it necessary to review my priorities in life. I was heavily involved in providing support and professional development opportunities for teachers, so made the reluctant decision to withdraw from that and somehow managed to juggle my remaining roles over the next three years.
In 2013 my father’s health was deteriorating. He was struggling to cope with the impact of Mum’s symptoms. I was exhausted with demands of teaching full time and driving backwards and forwards at weekends and several evenings a week to support my parents who lived elsewhere. I reluctantly decided to take early retirement as my own health was beginning to deteriorate. Unsurprisingly many carers neglect their own mental and physical health putting the needs of their loved one first. In the 2018, the ‘State of Caring’ survey 72% of carers responding said they had experienced mental ill health and 61% reported physical ill health because of caring.
Financially I was more fortunate than some. Apart from one period of maternity leave I had been working continuously for 38 years so was nearing my maximum occupational pension. What I hadn’t factored in was the loss of State Pension, given that I was born in the 1950’s and, as a ‘WASPI’ I would have a delay of four and a half years before qualifying. The financial impact of this meant that many of the plans I had hoped for my retirement had to be abandoned due to the unexpected deficit in pension. Like myself, many female family carers of people with dementia fall into the same age bracket and for those without an occupational pension the only option is to apply for benefits which in no way equates to their loss of income. The 2018 ‘State of Caring’ survey found that 37% of those responding described their financial situation as ‘struggling to make ends meet’, while a further 20% said they are in or have been in debt as a result of caring. The impact of caring is greater the longer someone has been caring.
In June 2014 Dad became very ill admitted to hospital. On his discharge a local authority care package was put in place to help support them both mainly with personal care. Fortunately, my father had insisted on putting Power of Attorney in place, spending time ensuring I was up to speed with their personal affairs. This is not the case for many carers and can be a major cause of stress, particularly where family members have disagreements
After Dad was discharged from hospital an enhanced care package was put in place but sadly Dad was readmitted to hospital early September and passed away three weeks later. Mum still had enough capacity to express her desire to remain in her own home. With the support of a care package and my daily visits to do her shopping, housework and ensure she attended medical appointments, we were able to maintain her in her own home for the next fifteen months. This put unbearable strain on us as a family. I wasn’t sleeping properly, always on edge waiting for the next phone call from Mum wondering where Dad was, sometimes in the early hours, as Mum had no sense of time. In January 2016 Mum had a major fall and was hospitalised. Due to Mum being considered a falls risk and developing continence issues we considered bringing her to live with us but sadly had to make the decision that residential care was in Mum’s best interests.
This was undoubtedly one of the most stressful periods in my journey as a carer. Not only was I dealing with the grief at losing my father several months before, I was also grieving for the loss of my Mum to Alzheimer’s. There was the immense sense of guilt at somehow having failed Mum by placing her in a care home. Thankfully my parents had some wonderful friends, neighbours and their church family who supported me through this experience. I was also reassured by my Mum’s GP that I was making the right decision. I have been blessed that the care home we chose as best suiting Mum’s needs has met all our expectations and consider us to be partners in Mum’s on-going care.
I then contacted the local Alzheimer Scotland dementia advisor and attended several their information sessions, which provided me with invaluable support and brought me into contact with other carers of people with dementia. It was at one of these sessions that I learned about and subsequently joined NDCAN.
Through my involvement with NDCAN I am now aware that in Scotland we are fortunate to have a voice in influencing policy and provision for carers. In many ways we are well ahead of other parts of the UK and beyond. There are, however, numerous frustrations amongst carers that many of the systems, initiatives and entitlements available to us are not effectively communicated or sufficiently resourced to make an impact where it is needed. An example is the Carers Act, which took effect a year ago and sets out to ‘promote, defend and extend the rights’ of adult and young carers across Scotland’. At a locality carers meeting recently, I was not surprised that not one person was aware of its existence or had been asked to complete an Adult Carers Support Plan. With the formation of Integrated Joint Boards and decisions relating to allocation of funding being taken at local level there are concerns that there may be inconsistencies of carers support across Scotland.
A significant burden of care falls on all carers, particularly women who form the largest percentage of unpaid carers. Our changing demographics, resulting in an increasing ageing population and workforce will mean a greater number of women are likely to provide unpaid care in future years. It is vitally important that their health needs and well-being are planned for in research, policy and practice and protected urgently for those in this situation now and in the long term for future women carers.
National Carers Action Network (NDCAN)
Based in Alzheimer Scotland, NDCAN has approximately 60 members from different backgrounds and experiences of looking after someone living with dementia, usually a partner or close relative. Members share the desire to make a difference for unpaid dementia carers in Scotland.
The network campaigns for better outcomes for carers, contributes to education of health professionals working in dementia care and engages with Scottish Government and others responsible for developing policy in a range of dementia and carer related areas. These include improving post diagnostic support, advanced and end of life care, improvements in acute care and residential settings. Members do this both nationally and locally, always with the focus on meaningfully involving family or unpaid carers.
A newer focus, moving forward, is connecting with localities. This is about working with Alzheimer Scotland local engagement work, listening to local carers to build a ‘collective’ set of strategic campaigning priorities and, where possible, supporting local carers groups influence local decision makers. Thus, focusing effort on closing the gap between an excellent national set of national dementia strategy commitments and the mixed picture of how well these are implemented at local level in local communities.
An NDCAN member’s personal account of her caring story above highlights some of the gender related issues. Despite the fact the third national dementia strategy is now into its third year, there are still significant impacts on female carers of people with dementia and much more research, planning and long term strategic thinking needed on this.
The NDCAN work programme and campaigning priorities are set by members. You can contact NDCAN or find more information about NDCAN using the links below:
Tel. 0141 410 1171