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Dementia Aware  

Dementia and sex

What you need to know about intimacy, sexuality and behaviours in dementia

There is a widespread assumption that as we age, we lose our sexual allure and desire, and the thought of older people being sexually active is often joked about or thought of as just ‘icky!’

With aging, there is a lessening of libido and a drop in hormone levels that reduces sexual urges, but love, affection and a need for closeness remains.

Dementia is a monumental life event that severely impacts numerous people; no one is, however, more impacted than the romantic partner.

The diagnosis means that the relationship is changed forever.

Just as the person with dementia loses cognitive and functional abilities, many partners may also lose tangible benefits they received from the relationship:

  • companionship
  • intimacy
  • affection
  • division of household tasks.

However, the onset of dementia does not have to signal the end of a healthy sex life; most people with dementia remain sexual beings with a need for emotional security, self esteem, affection and physical closeness.

In fact, for the person with dementia, sexuality becomes a means of maintaining an identity and a way to grasp glimpses of love, and sadly, there are times, when sex or expressions of physical intimacy and closeness are the only way that the person with dementia has left to communicate with others.

Many couples find that they can still be close through their sexual relationship, even when other means of expression have diminished, and some couples find new and different ways of sharing closeness, comfort and intimacy.

Unfortunately, some partners may be so exhausted with caregiving responsibilities they are too tired to enjoy an intimate relationship, or may find that the physically intimate tasks they must perform for the person with dementia can put them off a sexual relationship.

Other partners feel a complete disconnect in the relationship as the person with dementia has changed so much and is not the same person.

For many partners, a conscious adjustment will be necessary for romantic life and/or a relationship too continue, expect less conscious acts of love, but know there will still be those subtle moments of love and closeness.

In general, dementia diminishes sexual behaviour because there is:

  • Less brain function, loss of the higher level cognitive capacitates necessary for communication of ideas and feelings. The emotional needs and desires remain; however, the expression of this need varies greatly from subtle gestures to highly inappropriate social behaviour.
  • Less testosterone
  • Less of everything to get things going

Unfortunately, in some people with dementia, when short-term memory vanishes, behaviours such as fear, sadness, happiness, anxiety and sexuality are heightened and this can be when inappropriate sexual behaviours first take place.

For example, we know that in some people with dementia (especially with frontal lobe involvement) social inhibitions falter, that psychosis and paranoia create chaos in relationships, and certain medications may lead to an increase in sexual activity, and this can leave the caregiver devastated and trying to deal with his/her own emotions.

Caregivers are blindsided by the development of unexpected sexual behaviour. Not only are they unprepared, but they also do not know how to react to it.

Also, a well-known phenomenon in people with dementia is regression to past experiences, and for many, they may regress to past sexual situations (due to neurochemical structural deterioration) and exhibit prior behaviours, e.g. same sex attraction.

When sudden, unexpected sexual behaviour begins, ask yourself if the person with dementia has:

  • Started a new medication or medication doses have changed
  • Drunk alcohol
  • An elevated blood sugar (if diabetic)
  • Possible delirium

Strategies that may help you manage the behaviours:

  • Redirection
  • Distraction

It is important to try to not take the person’s behaviour personally. Such behaviour is likely caused by difficulties and changed perceptions related to the dementia. However, do not tolerate behaviours that make you uncomfortable and/or unsafe.

Talk to your doctor or geriatric psychiatrist.

If sexual behaviour continues, then medication will likely be required.

Over time, and certainly as the dementia progresses, it is not unusual for some partners to form or want to find relationships outside their commitment to the person with dementia. This is a very difficult time, as they may encounter societal and religious pressures and feel enormous guilt.

It is important to remember that the healthy partner is also experiencing tremendous loss of love and support and still needs to feel love and support too. Similarly, it is not uncommon for people with dementia in residential care homes to be attracted to and want to pursue relationships with other people in the care home.

Sexuality is an inherent part of being human, and is experienced by every person.

If you have any questions or concerns, please reach out and speak to someone:

  • your doctor
  • family 
  • trusted friend 
  • counsellor 
  • a religious/spiritual adviser 
  • Interior Health clinician or social worker 
  • or call the First Link dementia helpline at 1-800-936-6033.


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Dementia and the senses

What you need to know about dementia’s effect on the five senses

As we age, many different changes occur in the body, including changes in the sensory organs that enable us to see, to hear, to touch, to smell and to taste.

With some modifications to the environment and dietary adjustments, most people can adapt.

However, for people with dementia, these sensory changes are confusing, stressful, and can put the person’s safety at great risk.  

Vision changes

  • Pupils size becomes smaller and slower to constrict which creates problems with glare. Reflection of light on anything shiny is too stimulating and a falls risk (Meisami, Brown and Emerle, 2003)
  • Slowness of pupils to dilate in the dark creates difficulty in seeing where one is going
  • Visual acuity is less sharp in dim lights, sees shadows, shapes
  • In dementia, the field of vision can narrow to 12 inches around, almost like wearing binoculars. This means the person has a very limited line of sight. If they cannot see it, it does not exist
  • When brain processes information that is too stimulating, it reacts by shutting down information from one eye leaving the person with dementia to see with one eye (monocular vision). This loss of depth perception and contrast sensitivity results in the person with dementia doing strange things e.g. exaggerated stepping, picking at air (Snow, 2016)
  • Colour agnosia reduces ability to differentiate between colours of similar dark or light tones therefore hard to identify objects that are set against a background consisting of similar colours
  • Most people with dementia find vision changes the most difficult to deal with because the brain does not understand and process the picture/image it is receiving

Plan

  • Wear glasses
  • Clear demarcation between floors, walls, toilet and wall/floor
  • Remove throw rugs, clutter to create clear pathways
  • Low glare light/automatic lights indoors and outdoors
  • Avoid busy patterns, checkerboard or zigzag designs
  • Appropriate footwear, use mobility aide

Hearing changes

  • Auditory canal narrows, cerumen glands atrophy causing thicker, dryer ear wax that is more difficult to remove and increases hearing impairment
  • Everyday sounds can become too loud, too stimulating, creating distortion in what the person with dementia hears/understands
  • Problems with hearing and ear pain will have an impact on person’s ability to concentrate on eating. An interesting study found a correlation between development of ear wax and reduced ability to chew among people who did not have their back teeth (Frasman, 2005)
  • Many people with dementia have difficulty chewing and this may increase susceptibility to impacted earwax, pain and hearing loss
  • Difficulty hearing/understanding creates feelings of isolation and frustration

Plan

  • Clean ears daily, assist with hearing aids
  • Regular visits to doctor and dentist
  • Reduce noise in person’s environment
  • Avoid crowded, busy, noisy areas as too stimulating for person to process
  • Face person when talking, speak slowly and clearly, write down message, show item

Touch changes

  • Tactile sensitivity decreases because of skin changes and loss of large numbers of nerve endings particularly in fingertips, palms of hands and lower extremities (Meisami, 1995)
  • Skin becomes thinner and more susceptible to open areas increasing risk of infection
  • Inability to distinguish between hot and cold
  • Decreased nerve endings reduce pain sensitivity, feelings of soreness and discomfort. e.g. pressure ulcer
  • For some people, any touch to the skin is painful e.g. in the shower, water feels like needles

Plan

  • Inspect skin and nails, especially toes, look for sores, areas of redness, bluish hues, areas of extreme cold/warm
  • Identify hot and cold faucets, reduce temperature in hot water tank
  • Wear footwear indoors/outdoors, wear mittens in cold weather
  • Ensure sharp corners are padded e.g. table

Sense of smell

  • Studies have shown that an impaired sense of smell is one of the earliest symptoms of Alzheimer’s and Parkinson’s disease
  • Of all the senses, age takes the greatest toll on smell perception
  • Changes in smell are attributed to loss of cells in the olfactory bulbs of the brain and a decrease in sensory cells in the nasal lining
  • Unable to detect smoke, leaking gas, spoiled food

Plan

  • Install smoke detectors and gas detector
  • Write expiry dates on food, check fridge contents weekly

Sense of taste

Taste, along with smell and nerve stimulation determine flavour of foods and helps distinguish between safe and harmful foods.

  • With age, there is atrophy of the taste buds and decrease in saliva production
  • As taste buds diminish and insulin in the brain drops, many people with dementia experience changes in appetite and can overuse salt, spices, sugar
  • Studies have shown when dementia attacks part of the brain responsible for self-restraint in diet, unhealthy cravings increase (Sauer, 2014)
  • Unable to identify food by taste, including mouldy food, sour milk
  • May eat toothpaste, mouthwash, household cleaners mistaking them for food

Plan

  • Remove medications, toiletries, cleaning items
  • Limit access to salt, sugar, junk food
  • Wear properly fitting dentures, perform good oral care
  • Remove any small objects that resemble candies/food
  • Use saliva substitutes, encourage fluids
  • See dietician for meal suggestions

The sixth sense

People with dementia, even if unable to communicate, still have an awareness of the world around them, and they can sense when someone is being unkind or disrespectful.

"They may forget what you said, they may forget what you did, but they will never forget how you made them feel." (Maya Angelou). 



Is it really dementia?

What you need to know about conditions mistaken for dementia

You misplace items, you forget to take your medications, you feel tired and weak, you cannot remember what you did five days ago.

You are scared and anxious, but will not see your physician because you are worried he/she will say you have dementia.

But is it really dementia? Or could it be something else?

It is estimated that approximately 15-20 per cent of people diagnosed with an irreversible dementia, actually have dementia symptoms caused by an underlying medical condition e.g. normal pressure hydrocephalus (NPH)* (see rare and unusual dementias).

Once the condition is treated, cognitive function usually improves, and often, completely resolves (Senties and Estanol, 2006).

It is very important that anyone experiencing memory loss and confusion see a physician for a thorough physical and cognitive assessment, blood tests, and CT Scan/MRI of head, as there are many different conditions that present with symptoms that masquerade as dementia.

Neurological

  • Depression: acute depression can cause a syndrome of cognitive impairment called pseudo dementia. Depression can make the brain less efficient, cause cognitive clouding and confusion and difficulty with decision making. There is also evidence that important memory structures in the brain can shrink during episodes of depression; however, once the depression resolves, these structures recover and the dementia like symptoms resolve (Wint, 2017).
  • Chronic subdural hematoma (bleeding in the brain): is a common and treatable cause of dementia. Symptoms include headache, gait and balance problems, confusion, and seizures.
  • Sleep apnea: results in decreased flow of oxygenated blood to the brain causing dementia like symptoms
  • Brain tumour: the early symptoms of a slow growing tumour, often resemble dementia, especially in the older person. The tumour can press on areas of the brain that control mobility, memory, mood, etc.
  • Post Concussion Syndrome: see Dementia and Concussion

Medications:

Reactions to a specific drug, a combination of several different drugs, or combining prescriptions medications, herbal supplements and/or over the counter medications can cause confusion and poor functioning especially in the older person.

As we age, the body metabolizes and eliminates medications less efficiently, drugs can build up in the body, and the side effects often look like dementia.

There are also specific medications that can cause dementia-like symptoms:

  • Opioids: painkillers e.g. morphine
  • Benzodiazepines: anti-anxiety drugs e.g. ativan
  • Steroids: iatrogenic glucocorticosteroid dementia syndrome is often unrecognized but occurs in about one in 250 people treated with steroids and is most common in the elderly (Varney, 1984). Clinically, there is impairment of memory, concentration and attention. Cushingoid features (puffy face, weight gain) may also be present
  • Cocaine/heroin: if taken in high doses or over a long period of time, may cause dementi-like symptoms especially in the older person. Medically supervised withdrawal from the drug(s) usually reverses the symptoms
  • Any medications that cause dry mouth, constipation or sedation (anticholinergic side effects)

Infections

  • Lyme disease: is a bacterial infection transmitted through bites of infected ticks. Initially a person will present with flu-like symptoms, however, if left untreated, the infection can present in a multitude of symptoms including arthritis. Overall, 10-15 per cent of individuals develop neurological problems such as inattention and cognitive impairment. Subjective memory loss has been suggested, but clear dementia syndrome is very rare (Finkel, 1992)
  • Cerebral toxocariasis: is transmitted from roundworm in dogs to humans. As the infection progresses, the larvae migrate to the central nervous system, especially the brain. Clinically, the person presents with cognitive impairment and other dementia like symptoms. Treatment with antihelmintic agents (antiparasitic drugs) reverses the symptoms
  • Syphilis: see Rare and Unusual Dementias

Toxic exposure

  • Chronic lead poisoning: presents with gastrointestinal and neurological symptoms e.g. depression, confusion, cognitive impairment. Treatment with chelating agents reduces body stores of lead and symptoms eventually resolve (Chisholm, 1990)
  • Chronic mercury or arsenic poisoning: symptoms include neuropathy and confusion. Treatment for both is chelation therapy

Metabolic Disorders

Diseases of the liver, pancreas or kidneys can lead to dementia by disrupting the electrolyte and chemical balance in the body e.g.  sodium and calcium, glucose e.g. renal encephalopathy, hepatic encephalopathy.

Hypoxia

People who do not have enough oxygen in their blood, may develop dementia symptoms. Blood brings oxygen to the brain cells, and all cells need oxygen to live.

Common causes of hypoxia:

  • Chronic Obstructive Disease (COPD) e.g. emphysema
  • Heart disease e.g. congestive heart failure (CHF)

Nutritional Deficiencies

  • Chronic anemia: a low red cell count decreases oxygen delivery to all cells in the body. In the brain, this can reduce memory and thinking abilities and may contribute to damage to neurons (Yaffe, 2013).
  • Vitamin B12 deficiency (pernicious anemia) can result in neuropathy (tingly prickly sensation in hands and feet), memory problems, confusion, irritability, depression and/or paranoia. Symptoms resolve with treatment
  • Thiamine deficiency (Vit B1): see Five Common Dementias
  • Niacin Deficiency (Vit B3): symptoms related to skin, digestive system and nervous system e.g. memory loss, disorientation

Endocrine Disorders

  • Hyperparathyroidism: recurrent kidney stones, peptic ulcers, depression and cognitive impairment. Treatment can be medical or surgical (Geffken, 1998)
  • Hypocalcaemia secondary to Hypoparathyroidism: can cause confusion, dementia, psychosis. Treatment is replacement of vitamin D or calcitriol with oral calcium (Gupta, Fiertag, et al., 2012)
  • Hypothyroidism: memory impairment ranges from mild cognitive impairment to severe dementia. Treatment with thyroid replacement medication may reverse cognitive impairment


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Young onset dementia

What you need to know about younger people with dementia (YOD)

Young onset dementia, also known as early onset dementia, describes any neurocognitive disorder (dementia) diagnosed in someone under 65.

Due to the population increase from the Baby Boomer generation, young people developing young onset dementia is becoming more common, with approximately one person in every 1,000 below 65 developing young onset dementia (Draper and Withall, 2016).

In 2016, approximately 200,000 people were diagnosed with young onset dementia in the United States, 42,325 in the United Kingdom, 25,938 in Australia, and 16,000 in Canada (Alzheimer Society, 2016).

While each person’s experience with dementia is different and although the symptoms of dementia are similar regardless of age, younger people with dementia have many different needs and challenges compared to the older person with dementia.

The most common types of young onset dementia include:

  • Familial Alzheimer’s disease (30 per cent)
  • Vascular dementia (18 per cent)
  • Frontotemporal dementia (12 per cent)
  • Alcohol related dementia (10 per cent)
  • Lewy Body dementia (10 per cent)
  • Rare and unusual dementia (20 per cent)
         • Down’s syndrome dementia
         • Creutzfeldt Jakob disease(CJD)
         • HIV-neurosyphilis
         • Corticobasal degeneration

Young onset dementia can be difficult to recognize and can mimic other illnesses — depression, anxiety, stress related illnesses, peri-menopause.

It is extremely important that any person suspected of having early onset dementia has a full assessment: cognitive and neurological assessment, blood work, and CT scan of head.

Some of the early signs are:

  • Memory loss
  • Easily stressed, frustrated or angered
  • Behaviour and/or personality change “does not seem like him/herself”
  • Changes in walking, balance, coordination
  • Subtle changes in communication — forgetting words, mixes up words

For the young person, the diagnosis of dementia is much harder to accept as it is completely unexpected; it is a life-changing moment for everyone in the family unit.

The person is usually in the prime of life, employed, supporting and caring for a family, socially outgoing, physically active and healthy, he/she may also be caring for older parents.

Now, the person, the entire family must adapt to a different way of life, to the changing circumstances, and to the changing roles and responsibilities.

Emotional

The emotional impact upon hearing the diagnosis will be different for each person, and can range from disbelief, denial, frustration, anger, sadness, and depression. All these emotions are perfectly normal and to be expected.

Consider going to family counselling, the opportunity to share feelings and fears will help everyone as they try to understand the diagnosis, If the dementia is genetic, then counselling/testing may be necessary.

You may want to share the diagnosis with friends; it is your decision, but is a good idea for you to have a support network of people you trust who can help support you and your family.

Social

It important to remember you can still do the things you enjoy and live a full life.

Yes, it will be different, you will likely have to make some changes; however, living well means adapting to changes as they occur. Continue to meet with friends, go out for dinner, hockey games, etc.

Unfortunately, many community programs for dementia support the older/retired person and may not be a good fit, so contact the Alzheimer Society of B.C. or Interior Health for information about resources and supports.

Financial and Legal Planning

The sooner you make decisions about your health care, your finances and your estate, the more in control you will feel and the better prepared you are for the future and ensuring your family are taken care of.

You should have:

  • Will
  • Filed income tax
  • Enduring Power of Attorney (financial/legal affairs) *
  • Representation Agreement (personal care/health care decisions) *
  • Advance Directive which is a written summary of your wishes and instructions for future health care*
  • If you are the ‘Breadwinner’ talk to a Financial Advisor/ Bank re: assets, mortgage, debts
  • For advice re: disability, financial aid, contact Interior Health for Social Worker support

​*For further information on Power of Attorney, Representation Agreements and Advance Care Planning see www.nidus.ca.

Working

You may be able to continue working, however, if your job requires driving, operating machinery, or may affect safety, then your employer must be notified.

Depending on the work you do, some adjustments to work environment and/or work schedule may be necessary. Working will provide income, socialization, a sense of purpose/satisfaction, and a temporary distraction.

Daily Life

  • Follow a healthy diet, exercise, cognitive stimulation exercises
  • Continue to participate in sporting, social activities
  • Focus on your strengths, remain active and involved in family life and community activities
  • Initially, you may continue driving, however, over time, you may find it becomes more difficult and not safe. Talk with your doctor and family. If you wish to continue driving, you will be required to take a road safety test
  • If mobility or balance is worsening, consider using adaptive aids — shower stool, grab bars and request a home safety assessment from Interior Health Community Care
  • To help stay organized and remember appointments, keep a journal or diary, write important events on large calendar on wall or refrigerator, look at assistive technology options e.g. talking clock, medication reminders
  • Write letters, make videotape, compile a memory book for family and friends

Resources

www.facebook.com/YoungOnsetDementiaSupportGroup?fref=ts
www.uwaterloo.ca/ ..../young-onset-dementia-us-us-guide
www.youngdementiauk.org
www.young-dementia-guide.org
www.youquest.ca
www.alzheimer.ca
First Link Dementia Helpline, 1-800-936-6033



More Dementia Aware articles

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About the Author

Tracey Maxfield, RN, BSN, GNC(c), DDS, is a dementia educator, consultant and advocate with over 35 years experience working with dementia populations in the U.K. and Canada.

She has worked in a variety of heath-care settings: acute care, palliative care, community care, residential care, physicians offices and community health centres..

Maxfield is a Central Okanagan Purple Angel Dementia Ambassador.

She can be reached at [email protected].



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The views expressed are strictly those of the author and not necessarily those of Castanet. Castanet does not warrant the contents.

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