Are all people living with a diagnosis of dementia treated equally?

There are thought to be around 650,000 people in the UK who are estimated to experience some degree of gender non-conformity (Gender Identity Research and Education Society).

It is widely recognised that there is limited evidence on the experiences of transgender people in Scotland and even less information regarding transgender people who have now developed Dementia.

For the first time, there is an ageing transgender population and as a result, many health and social care professionals are working with older transgender clients for the first time, many of whom have complex cognitive, social or bodily needs relating to their gender reassignment. We are only now seeing the first generation of transgender people in their 60s and over who have taken hormone therapy for 30 years or more, many of whom are living with gender reassignment surgeries performed using the very different techniques of the 1960s and 70s. Care is something that is often taken for granted. Illness and disability can occur without warning through accident or old age and the opportunity to arrange and to inform local caring services about their lifestyle or past as a male or female may not be possible. If the person in need of care is unable to wash, dress or manage basic care requirements then health and social care services will be involved, whether care at home services or care home services.

Many health and social care services are ill-equipped to deal with the needs of transgender seniors, and have had little exposure and so have little understanding of their history or the unique needs of transgender people, who fear that a move to assisted living or receiving care within their own home may leave them vulnerable to discrimination and harassment.

When we think about sexual orientation, gender identity and older people, we overwhelmingly assume that the older people who use our services are heterosexual and non-transgender. As a result, issues of sexual orientation and gender identity have often been invisible in the planning and commissioning of services for older people. The issue is further complicated through a societal culture which seldom seems to recognise or empower older people’s sexuality. This is particularly true in instances where the older person is perceived as vulnerable, specifically in a residential or nursing care setting where issues of capacity and consent may make the nurturing of an individual’s sexuality more complex. The progressive deterioration of the most recent memory for a transgender person could mean only remembering living in another gender, including not remembering having had gender affirmation procedures or surgery. A real concern of many transgender people is that they will be misgendered in the event that they become reliant on others for care.

One thing, though, is clear – for transgender people, ageing into the later years of life can present a unique set of challenges.

An example of this is older transgender people were reported to have become distressed within care settings because they couldn’t remember whether or not they have come out to fellow residents or staff and that this was causing significant anxietyto them.

There is limited understanding of how transgender people are affected by dementia. Whilst cultural awareness training for service providers is  required to improve the understanding of transgender clients and how appropriate and respectful care can be provided. Service providers also need resources and information to optimise culturally appropriate care for transgender people

There is a long way to go however, we must ensure that transgender people are protected against discrimination, harassment and victimisation on the grounds of gender reassignment.

To this end the Scottish government has begun engaging with transgender people to advise on trans-specific policies, thus enabling full participation in everyday, and public life by empowering transgender people, changing hearts and minds and creating a network of allies.

It is just a little over a week before we will be going to the polls to cast our vote in the General Election. It’s been an Election dominated by a range of issues in which, unusually, social care has featured quite prominently. I recognise that social care is a devolved matter and that it is the Scottish Elections which impact most significantly upon decision making for care and support. However, the political parties seem to have blurred this line by making commitments to spend and policy even on devolved matters. Mind you some political parties are so focused on the NHS and the health service that they are almost blind to the fundamental role of social care for our nation’s health and wellbeing. But it would appear there has at least been the start of a debate on the role of social care.

And my goodness I have found the whole debate about the care and support of some of the most vulnerable individuals in our society to be immensely depressing. The discussion has been framed, by the media and many politicians, within a discourse of pessimism and crisis. Language about the old has been discriminatory and stereotypical. Old age has been portrayed as a ‘problem’ to be solved; the solutions offered usually calculated as financial responses. The concern has been less about the quality of care for the minority than a desire to reduce the cost of that care upon the majority.

Coupled with this there has been a singular lack of positive vision about what social care and care and support of our older citizens needs to look like. Those of us working in the ‘system’ know that we cannot carry on the way we are. We recognise the need for radical change and reform but alongside that, if we are serious, we also acknowledge the glaring gaps in adequate resourcing and financing for our sector.

It has saddened me that the debate on social care across the United Kingdom has been undertaken with so little grasp of the real issues and a singular absence of dynamic thought-through vision. But then again when care becomes a political football, considered solutions to complex challenges are often sacrificed to political sound bites.

So as I go to the polls next week I am looking for a candidate or a party who amongst others things will:

Celebrate the reality of more of us growing older.
Old age needs to be seen as something to be proud of. We need to identify and declare the contribution, capacity and creativity of age rather than its drain, diminishment and dependency.

Not play the old and young off against each other.
The old are not the enemy of the young. We should not have to make choices between valuing the voices of the young, their education and development against the right of the old to be heard, to influence and to be supported.

Celebrate that the work of care is a fundamentally critical work and should be rewarded accordingly.
Caring as a career needs to be promoted and given priority. Working with and for people should be recognised as intrinsic to basic humanity. We should not be paying the basic, even a living, wage to those who dedicate their abilities to enabling the health and purpose of others. We should call out the perversity of a society that rewards those who pursue wealth for the self more than those who nurture wellbeing in others.

Do something to reassure the thousands of citizens of Europe caring today for our old and young.
As a society we are enriched by the work of thousands of carers from Europe who have become the friends and advocates of those being cared for in our communities. They deserve the dignity of knowing they are welcome and having their presence enshrined in immediate commitment rather than used as a bargaining chip at the tables of Brexit negotiations.

Work with older individuals, their carers and those who provide support to re-shape care fit for the 21st century.
A vision of care at home which allows people to have time to be, which helps to diminish the emptiness of loneliness by presence, and enables staff to identify preventable illness is a vision of a care system where we are focused on what’s best for individuals, not what is best for the ‘system’.
A vision of nursing and residential care where people are enabled to live their later lives with dignity, where individual needs are addressed and palliative support is adequately resourced should be the mark of what it means to describe ourselves as a real community. We should not have to struggle to justify the resourcing of this.

Work with providers of care to build trustful, dignified right-based care.
The current system is devoid of trust. Commissioners use systems to monitor providers and their workforce which serve to strip out dignity and respect. We have to move towards a mutual, co-responsible, trust-full delivery of care where the rights of the person cared for are upheld by a workforce itself treated with dignity and value.

Start to make hard decisions that might involve vanity projects being sacrificed and social care being prioritised.
We have to challenge the casual assumption that there is enough resource in the health and social care system – there is not enough to deal with demands today, never mind increased need tomorrow. That involves politicians and wider society making challenging decisions and choices, realigning priorities and objectives. Social care matters, contributes to and deserves to be valued just as much as finance, engineering, higher education or defence.

So just seven aspirations for the final week of campaigning. Will I find a candidate or party who on June 8th will help me be closer to achieving a human rights enshrined, adequately resourced, societally respected, older people led, delivery of care in Scotland?

It’s for you and all voters to decide.

Dr Donald Macaskill

@DrDMacaskill