U Hla Htay is a former carer of his wife with dementia. Email: uhlahtay9@gmail.com (964 words)

I am involved in many research studies as someone with experience as a family carer. In this role I have come to understand that practitioners in health and social care can limit some of the negative effects of family caregiving on carers’ health. Some of them can use interventions such as therapy to increase family carers’ physical health and spiritual well-being. Improving carer well-being and increasing our ability to care for our family members is likely to increase quality of life for both carers and our family member (World Health Organization, 2012).

Mittelman and colleagues (2007) found managing the care of a relative with dementia is very lonely, time consuming and difficult, nevertheless, most of the family members they interviewed said they would prefer to keep their spouses at home with them for as long as possible. In my view the quality of life of both someone with dementia and family carers is generally better at home. These aspirations are achievable but come with a cost in human terms and financial terms. Most people with dementia want to remain living independently in their own homes as long as possible and to have a good quality of life and end of life. I am pleased to be supporting the new NIDUS (New Intervention for independence in Dementia) Study (being conducted by Claudia Cooper and colleagues) which is being funded by the Alzheimer’s Society.¹ The Social Care Workforce Research Unit is a partner in this study with other universities.

Being involved in such studies makes me think about other important aspects of dementia care, which as most readers will know takes place at home rather than in care homes and hospitals. It has been government policy for a long time to provide care in the community, and it is strongly encouraged in the National Dementia Strategy, Objective 6 (Department of Health, 2009). Over ten years ago, Martin Knapp and his colleagues (2007) reported that the total financial cost of dementia care in UK amounted to £17 billion, or an average of £25,472 per person with dementia. The costs included were those provided by care agencies and the financial value of care provided by family and friends. The total estimated annual average cost of care for a person in the community with mild dementia was then £16,689, for a person with moderate dementia £25,877, for a person with severe dementia £37,473. For people living in a care home the average annual cost was then £31,296 (all these costs are higher now). These averages mean that the costs are similar when looked at as a whole. Many family carers like me think that care at home is also generally better than care in a care home, although we recognize that not everyone has family members who are willing or able to provide substantial care and not everyone with dementia wants to live with their family.

I looked after my wife for 27 years at home in the City of Westminster (as I have written about in a chapter in a book, Htay 2010). During this period, I was offered 6 weeks help at home followed by a period of 6 weeks stay for her in a care home offering respite care on a regular basis. In the care home my wife received 2×2 hours for personal care and exercise every day. When she was at home I received 4 hours of respite care for 4 days a week. In my experience my wife was more interactive, happy to receive family and friends visiting at all hours when she was living at home. Today I am saddened to hear from other family carers that ‘care packages’ for people with dementia at home are now reduced to generally 15-30 minutes for person with dementia and often no respite care provision for the carer. Respite helped me. Some people are not eligible for any practical help from local councils as budgets for care and support have been cut.

I think this is unfair. I think more financial support is needed to fund services for people with dementia and their carers at home. I am in favour of means testing (paying for care based on your income and wealth) but I think more funding is needed. I don’t understand how some people pay for social care while others get it free from the NHS under Continuing Health Care. It just does not seem fair. I know that for some families a move to a care home is the best option, but I think that the present situation means that carers do not get the support they need to carry on with caring.

Following my caring role, I am now working to make things better for family carers. I look forward to hearing of the early findings of the NIDUS study which is designed to help home care workers better support people with dementia at home and their family carers, and to more studies of respite care.

U Hla Htay is a former carer of his wife with dementia. Email: uhlahtay9@gmail.com

¹For more details of the NIDUS study please follow this link: https://www.alzheimers.org.uk/info/20053/research_projects/1134/centres_of_excellence_revolutionising_dementia_care_research/4

References

Department of Health. (2009). Living well with dementia: A National Dementia Strategy. London: Department of Health.

Htay, U. H. (2010). We learn to enter her world. In L. Whitman (Ed.), Telling Tales About Dementia: Experiences of Caring (pp. 58-64). London: Jessica Kingsley

Knapp. M., et al. (2007). Dementia UK. London: Alzheimer’s Society.

Mittelman, M. S., Roth, D. L., Clay, O.J., and Haley, W.E. (2007). Preserving health of Alzheimer caregivers: impact of a spouse caregiver intervention. American Journal of Geriatric Psychiatry, 15, 780–789.

World Health Organization, & Alzheimer’s Disease International. (2012). Dementia: A public health priority. Geneva: World Health Organization.