There are many gay, lesbian, bisexual and transsexual people (LGBT) who have Alzheimer's disease , but it is often difficult to access even the smallest piece of information on the needs of this community. Books or other sources that are very informative about all other aspects of care services and provision seem to omit or skim over this aspect. The internet is doing its bit to address this imbalance and now anybody can be better informed about LGBT issues. LGBT people with Alzheimer's disease, and their caregivers, have finally found a voice and their needs are beginning to be addressed more fully.
Guessing the number of LGBT People Affected by Alzheimer's
Discrimination and prejudice suffered by many LGBT people with Alzheimer's disease means that a true estimate of the numbers affected is difficult to judge. Many LGBT people are reluctant to identify their sexuality and access local services because of the discrimination they have suffered, or fear they may suffer. In the USA the 2000 census Bureau reported 1,188,782 Americans in same-sex domestic partnerships. Although the data does not give the parties' sexual orientation, the report states it is, "reasonable to assume that many, although not all, of these same-sex households exist because the parties are gay, lesbian, or bisexual (GLB)". In the UK, for example, between 35,000 and 70,000 lesbian, gay and bisexual people care for a person with dementia. This is based a belief that between 5 and 10 per cent of the population is thought to be homosexual and 750,000 people in the UK have dementia.
This translates to significant numbers of LGBT people with Alzheimer's disease and their caregivers whose needs may not being fully recognized or met.
What services do exist for Alzheimer's LGBT people vary on the area in which they live. Most big cities have significant numbers of LGBT people who are active in local community politics, or social and medical services, and who often provide specialist voluntary services and advocate on behalf of their members. However, in other towns and in rural communities, there are many people who are isolated by their sexuality.
Identifying the Needs of LGBT People with Alzheimer's
Because Alzheimer's disease affects mostly older people, (age being one of the biggest risk factors for Alzheimer's disease),
there are many LGBT people largely hidden from view within care arrangements. However, the 'babyboomer' generation arguably offers a more open and liberal perspective and for whom sexual issues are less of a barrier to caregiving services. Health and social services increasingly have to consider how they will react to these needs.
There are a number of other central issues for Alzheimer's, heath care and LGBT people. These include:
Disclosure of information, Issues of confidentiality
The older generation are more likely to have spent a lifetime passing as heterosexual so it can be emotionally upsetting for the person with Alzheimer's, their partner and relatives, to disclose previously secret information. LGBT people find that they have to give information but then they worry how it will be used. Will disclosure influence issues such as meeting the medical and nursing needs of a loved one? How will it affect future care planning or staff attitudes?
Health Care Planning
Like everyone, a great concern for LGBT people is to get the best possible care for a loved one. Health care decision making
involves legal, social and practical issues. An example is residential health care provision.
Residential care settings can vary in their understanding and preparedness for dealing with the needs of lesbians and gays with Alzheimer's disease. Care staff are not immune to prejudice, myth, and lack of education of some health conditions that are of importance to the LGBT community.
Legal Issues for LGBT People
The legal position of same sex partners can vary from State to State and country to country. In some, the law recognizes same sex couples and they have equal rights as heterosexual couples. This is not always the case. The Family Caregiver Alliance will give you more information about this complex area of legal rights, protection and entitlements. They can provide legal information on issues such as incapacity, estate and will planning, care provision for a minor who has not been adopted.
Further Information on Alzheimer's Disease and LGBT Issues
The Family Caregiver Alliance has dedicated information for the LGBT people with Alzheimer's and their caregiver. Lesbian, Gay, Bisexual and Transgender (LGBT)
Issues and Family Caregiving (2003)
American Society on Aging
Ageing and the nontraditional family
LGBT: Frequently Asked Questions
Human Rights Campaign for Equal Rights for LGBT People
To find out about local services contact the Office on Aging or Area Agency on Aging in which the care receiver lives. To find your local Area Agency on Aging, call Eldercare Locator, toll free nationwide at (800) 677-1116 or search on the web link for information from the Agency on Aging